Happy Holidays

For the holidays, here is one of my pencil drawings from an Old master painting.  It depicts Mary with a rabbit, the baby Jesus, Joseph, and a yon person of interest.

The Case of the Dissappearing Records

Disability Tip of the Day: Save hard copies of everything concerning medical records.  This is particularly important if a potentially disabling illness has been diagnosed.


The downside of our digital age is that after ten years computer medical records are expunged. This can be a problem if you find yourself some day in the position of having to apply for disability. For many serious illnesses that require ongoing care, the record stays fresh. But what happens if a person goes into a remission and doesn’t see a specialist for a long period of time? Or perhaps a patient dropped out of the mainstream for a while and went with alternative medical practitioners who were not in the system. What if the specialist who originally made a diagnosis is no longer in practice? What if a doctor has switched practices and records were lost in transit?
These are all problems that I’ve confronted in the course of my disability and in the long hike through the disability compensation process.  In gathering a medical history I found for reasons listed above and more, that much of my official history had vanished. So what to do? One can get rediagnosed, but that can be quite problematic for something that requires invasive procedures that have to be done under anesthesia - like IC - or for illusive illnesses that manifest themselves sporadically. A history can be pieced together through insurance records (at least theoretically), and specialists can add the diagnosis back to the records on another doctor’s word. But none of this is a good as holding fast to the original paperwork.

Moving on from paperwork to works on paper, I’m continuing to slowly expand my drawing collection. The work above is another drawing based on a painting I saw ages ago in a church in Rome. Those were the days! I’m glad I traveled as much as I did when I could. Should have done more!

The Faith Healer

Generally if weird things emanate from my body I would prefer that they do so in the privacy of my home. Typically that was the case when I was too sick to venture out much. But with increasing stamina and a more aggressive search for answers the world is now blessed with my quivering presence on an ever increasing level. This also unfortunately increases the chances of going spastic in a public place. This happened just over a week ago in an office waiting area. But this time an unusual thing happened. A self-proclaimed faith healer happened to be in the office and generously offered me her services on the spot. Willing to try anything I agreed. I don’t recall a word of what she said but the hand holding and chanting was amazingly comforting and I came to refreshed instead of washed out -although my muscles were pretty sore the next day.

There is so much about prayers that I don’t understand. But what I do believe in is the power of the person from whom that pure feeling comes from. After thinking about the faith healer who obviously believed in her ability to channel a higher power, I decided to honor her and her dose of pure compassion in one of my drawings. I had an old sketch of a monk that I made in Europe long ago that I refreshed with graphite and embellished with the healer’s hands. Most of what I produce now are such amalgams - the memory of the past blended with the experience of the present.

New Life for Old Works

For now, I won’t post anymore illustrations from the Small Long Book of Marvelous Cats. You’ll have to buy the book, that is, if I can find a publisher. I might just self publish and skip the tedium of sending out and getting back.


Instead, here is a three-dimensional cat that I created some years ago with hand-molded relief tiles and a mosaic background. It is on display at the Five Rivers Market in Orangeburg, along with a small gathering of other works. I had originally created this cat for the South Carolina Birds Show (he has a bird in his belly). He was not one of the selected works for that show so he stayed in storage all these years. Although an older work, I suppose you could say that he is new to the public. Check him out, and all the rest at the Five Rivers Market on Chestnut Street (the main drag) in Orangeburg. The work will be there until March 1, 2013. Many thanks to Julia Wolfe and Tine Culler for hanging this display for me.

The Five Rivers Market is open Tuesday through Saturday from 10AM to 6PM. They will be open this Monday for Christmas shoppers.

Dissociation Cat

Dissociation Cat




Its no fun for Dissociation Cat
He doesn’t know where he’s going
and he doesn’t know where he’s at
He meows and growls without even knowing
How terrible it is to be like that

So what kind of a blog entry should go with Dissociation Cat? Not an easy one but here it goes:

Spasms, paroxysms, neurotoxicity, seizures, pseudo-seizures. No one seems to clearly know what to call what happens to my muscles, or, for that matter, what exactly to do about it. In my diligent search for answers I came across that very last term, pseudo-seizure, and did some more reading on it because it piqued my interest. I believe it points to a fissure in medical understanding when it comes to unexplained symptoms. Surprisingly little seems to be known about seizures that occur without evidence of abnormal electrical activity on an EEG. Recently, however, I spoke with people who had seizures with normal EEGs and it gave me more than a mild dose of skepticism about how accurate a diagnostic tool they might be. One patient told me that her EEG was abnormal only on the fourth try! And some people have seizures that never turn up on an EEG. Clearly something is amiss.



What is clear, however, is that there is apparently a pecking order in neurology as to how seizures are classified. The literature I read tells us that “true” or “real” seizures are due to abnormal electrical activity in the brain and that everything else is a “pseudo-seizure.” I have two serious questions about that. Firstly, if EEG’s don’t always pick up on the first try, how is one ever to determine their validity? The second question I have is why a seizure in the absence of a positive EEG would be dubbed “not real.” Seems to me there might be more than one way for them to occur. Metabolic imbalances, for instance, or perhaps a circulatory problem.



Then there is the problem with terminology. I am of the school of thought that unless there is a false positive or negative on a test - such as a glitch in bloodwork - that tacking a word like “pseudo” onto an illness is generally a bad idea. It harkens back to the retrograde nineteenth century notions of “hysteria” in which the history default mechanism for unexplained symptoms was to blame the patient for having them. All this does is delay progress, discovery and relief. “Hysterical Paralysis” was the term of choice, for instance, until the cause of MS was finally established. So “pseudo” may just mean “don’t know yet.”



But the problem with the “pseudo” label is that no matter how you slice it, it has a decidedly pejorative ring to it. Pseudo means fake, not real, false, and branding a person’s suffering with such an epithet seems callous at best and immoral at worst. Indeed, some of the reports on pseudo-seizures that I read on the internet were truly disparaging. One can even watch a You-Tube video of an unfortunate victim having a “pseudo-seizure.” Out of curiosity I did watch it but only when I studiously wiped out the concept of the label. By only observing and not thinking “fake,” I was able to first of all see a human being and secondly one who was suffering badly at that. I also started noticing details, like a palsy in the left hand with a spasm in the thumb. It caused me to wonder if the person wasn’t really having some sort of mini-stroke. But I will leave that up to the experts in the hopes that the future may bring some inquiring and more open minds. I only hope that the poor patient received more than pseudo-treatment.

Bouncer Cat

Bouncer Cat


When a guest becomes a bore
Bouncer Cat shows him the door
Your home will never host a slob
When Bouncer Cat is on the job

Everyone has annoyances in their lives that they just wish would be taken away. This goes double for people with illnesses that cause chronic debility and/or pain. I created Bouncer Cat for my small book of verse The Small Long Book of Marvelous Cats in response to such problems as; bureaucrats that make me fill in forms not once but three times - or until it is to their liking; office workers that lose records; the occasional sultry and uncooperative medical personnel. Or perhaps I Conjured up Bouncer Cat to throw an awful illness out the door.

But these are things that will always be here, I’m afraid. And the only thing that can be thrown out the door is my response to them. So I’ve been learning to through away distress at the paperwork that never seems to be finished and the diagnosis that never is fully agreed upon. And again I pace myself. Even if it means filling in forms one or two pages a day and telling people when I have to get off the phone to rest.

On a happier note, we had a great trip to Jeri Burdick’s studio sale over the weekend. The ceramic and paintings are always a joy to see - even if I had to spend half the time lying on the couch. But the day was topped off by a wonderful gift - a highly prized hand made pit fired shark’s tooth.

Party Cat

Party Cat


Party Cat can sing and dancein every country - even France
When you have friends to entertain, a festive aura he’ll maintain

During my year long plus battle with what has been tentatively described as CFIDS, or Chronic Fatigue Immune Dysfunction Syndrome, there were long periods of time during the day when I just couldn’t do much of anything. During those times I took to watching videos - silly senseless ones at first, then educational ones when I could concentrate better. I dedicate those times to my illustration, Party Cat, who fills up the gap of energy with his own brand of entertainment. The large drum in the picture is the top of my actual djembe. The horn is a nineteenth century cornet.

Days of Either/Or

Disability Tip of the Day: If you are unable to do your own shopping and you live in a small town that does not deliver food., you must rely on hired people or friends to bring in sustenance. When someone takes the time to pick up supermarket food for you, it is best not to respond to their delivery with the comment “Wrong brand.”

Before I got sick, I would wake up in the morning fresh with ideas for the day - plans for teaching, plans for painting, plans for the construction of musical instruments. I would balance these against household chores - which I usually did with joy, and backing - which I did with relish.

During my several months of severe illness, about the only thing I could do was to lie awake in pain and wonder whether I would even make it through the day. Today I can do a bit more than that but my active times are still limited to a few hours in the morning and a few in the late evening with a range of sick attacks as day filler. What this means is that my limited energy has to be carefully parceled out and choices must be made: clean the floor in the bathroom or cook breakfast, make a drawing or fill out disability reports. What used to be done in an hour now takes a day. What used to be done in a day now takes three days to a week. Life has become an either/or challenge of a limited energy budget.

The illustration above from my Small Long Book of Marvelous Cats are the Mechanical Cats (just occurred to me that they should be called Meowchanical Cats) and their verse goes like this:

Mechanical Cats do all the chores
They clean the oven and mop the floors
They roast the chickens and grate the cheese
And just about everything as you please

Massage Cat

Handicapped Person’s Tip of the Day:


Should you be required to have a spinal tap, the medical staff will have you rest flat on your back in recovery for one half hour in order to avoid getting a low spinal fluid pressure headache. If, however, you are prone to headaches - especially migraine - better make lying flat and drinking caffeine most of the next day your priority.  But best to hope that you won't need the procedure at all.  But if you do, the procedure itself is quite okay and nothing to fear.
Picking up on the last line of verse from the Small Long Book of Marvelous Cats and the reference to aching bones, I introduce cat number two: Massage Cat. His image is above. Note the accouterments of his trade. His verse goes like this:

Whether your sport is football or dressage
Your aching muscles will need a massage
Massage cat does as he is bidden
While carefully keeping his sharp claws hidden

Cats Marvelous Cats

Handicapped Tip of the Day: When shopping, be sure to get a handicapped cart that has been plugged in and charged. Otherwise you may find yourself stranded in the middle of the store in a dead mobile full of groceries.

That is just one of the myriad challenges I’ve been facing during the past year as I deal with a body gone haywire and a brain not fully what it used to be. Fortunately, although my professional career is most likely over - at least until I and my limited abilities can perhaps find a new place in the world - I continue to produce art work. The slow pace of my production and my lack of mobility has changed my art work considerably. For one thing I rely much more on imagination. The drawings I do are no longer made with the market in mind but rather just to be a creative human being expressing herself. I find that at times I become more attracted to pattern and detail and I will post more examples of these.

Thanksgiving was quiet but good. I was able to do a few things during the day and even make a mince pie. So I’m thankful for what I can still do, and grateful that I have friends and a good husband.

I’ve taken to making small pencil illustrations for books of poetry. The complex poetry I illustrated was written well before I got sick. The present ones are short, humorous verses. Finding myself getting into a funk one day thinking about all the physical things that once used to be easy and enjoyable but now cause great strain, I came up with a book of “useful” cats who would do all the chores while I rested. I call the book the Small Long Book of Marvelous Cats. The first cat is illustrated above.  Garden Cultivator Cat does all the yard work and his verse goes like this:
Set him loose in your back yard

and Garden Cat works long and hard

raking, weeding, seeding, feeding

Your old bones won’t take the beating

Wrestling Men and a Swinging Ape

I am posting my drawing of battling men and a large ape in honor of election day. I was going to use this drawing as a springboard for a discussion of chronic illness again but I think I’ll take a break from that.


This drawing was remade from a sketch of a Roman copy of a Greek marble of wrestlers. Later that day I visited the zoo and made sketches of apes. Out of laziness or frugality (perhaps a bit of both) I sketched the ape on the same page as the wrestlers. I did this frequently because at the time I only thought of these drawings as material for ideas. Now I see the disparate subject matter as connected in a surreal way.

Big Cat in New Jersey

Having a rich, artistic imagination is one way to fend off a protracted debilitating illness. During my convalescence I invented imaginary “helpers” who could do all the things that I no longer had the strength to do. My latest creation in that vein is a small book of illustrated verse called “The Small Long Book of Marvelous Cats.” Even the notion of cats being useful is somewhat amusing. The book is full of cats that do the yard work, the house work, entertain, and even give massage therapy. One of the cats, Guardian Cat, was originally created as a protector of home and property. Today I revised the verse for this cat to honor governor Christie and New Jersey in their dark and cold hours of need. The cat is pictured above. The verse for the day is as follows:
Guardian Cat puffs out his furry mane
Opening wide his watchful eyes
Not for selfishness or political gain
But to protect his Jersey gals and guys

Goethe Twice Cooked

During my protracted illness, there were two other things besides my drawing that kept me distracted from unpleasant symptoms: reading and watching videos. When my symptoms weren’t screaming at me, I was even able to tackle more complicated literature and used my disabled time at home to read some classics. I read My Antonia, first. Then I vaguely recall the Eugene O’Neil plays. The classic Russian novel, Oblamov, got me through the cruel winter. And Ann of Green Gables - the entire series made the 2012 spring of incessant muscle wrenching nerve firing survivable. When my concentration and attention span was quite poor, I read Tales from a Chinese Studio, since each tale was a page or less in length. And the wood-cut illustrations to the Tales, were small gems.

This autumn I am reading Goethe’s Faust. I still recall some of my German so it is fun to go back and forth from the German and English. I was quite taken by a scene in Faust that took place in the home of a witch. The scene described two Meerkatzen, or long-tailed monkeys, taking care of a bubbling cauldron of witch’s brew. It so happened that in one of my sketch books from my travels in Europe I had drawn two monkeys. I remember that they weren’t done from life but were from a detail in a much larger painting. I always loved the life in the margins of greater works.



Taking this sketch of monkeys, I fleshed them out a bit and gave them a new coat of fur. I added a cauldron and a background both gleaned from Chinese bronzes. And voila - they now illustrate a scene from Goethe’s Faust. I post it in celebration of Halloween week.

Adrift

It is difficult to know where to begin to blog again after leaving off for over a year. It was not my intention to stop so abruptly. But something cruel and terrible happened to my health that virtually left me an invalid for a year. I am still recovering and am still disabled and mostly homebound but have regained enough strength in my arms to type at the computer again and enough stamina to work for a few hours in the morning and a few hours again late in the evening if I’m lucky. It started with a virus, then a bad reaction to an antibiotic. Add to that the stress of an orthopaedic injury, loss of a large contract, and my husband leaving to teach for a year in Norway and I do believe it was the perfect storm for major illness. It became a systemic respiratory, neuromuscular, gastro-intestinal nightmare that has still left me with muscles that jump and move about on their own, sick attacks that can last for hours, seizure-like episodes that are just about daily, and very very weak. The worst part about being severely ill has been the long, painful, fight for a diagnosis. I’ve been in medical limbo for the last year, subjected to hundreds of tests that all come back negative. Actually some come back positive but in those cases I’m always told that they don’t count. There was a tentative diagnosis of Chronic Fatigue Syndrome, also known as Chronic Fatigue Dysfunction Syndrome or Myalgic Encephalomyelitis. But the doctor who made the initial diagnosis has since retracted so I continue to be in medical limbo. But because his nurse helped me find information and advocacy for the disorder, at least he pointed me in the right direction. From time to time, I’ll tell a little more about the tale. But for today I would like to offer a sampling of two rays of hope that helped sustain me, even through the darkest hours of pain and loneliness. The first ray of hope was my art. Even at my worst, I found that I could prop up my weak arms by folding my quaking legs and putting my elbows into the cleft below my knee. I could hold a small sketch book and draw. The drawing began in February of this year and I have been at it ever since. The second ray of hope was the help I received from friends, neighbors, and concerned doctors. I would like to thank all of them. Without their help I don’t know how I would have survived. I thank my sister for sending me care packages from New Jersey and for being a sounding board even when I sounded dreadful. My neighbors took me in a few times a week so I wouldn’t be alone. My dear friend Julia Wolfe took care of me at her home for long weekends even as the weeks and months rolled by and my progress was so very slow. I am especially grateful to Dr. Jenrette at MUSC who made arrangements for me to expeditiously see a good orthopaedist and thereby helped me avoid orthopaedic surgery that would have been a disaster considering my condition. It was one huge weight lifted when I was so seriously sick with other problems. I’m also grateful to Dr. Francis Goldstein, who did in-hospital tests to rule out anything that would be likely to kill me outright and in so-doing, saved me a huge amount of time, money, and worry. My poor beleaguered doctors here in Orangeburg did whatever they could to relieve my pain and unpleasant symptoms. Dr. Brener in Charleston was also extremely thorough. Although I haven’t been exactly “fixed,” I would have to say that a brave and honest effort was made on my behalf. Duke medical university center was quite thorough as well and I may still return there for some follow up. The last place I would not have been able to get to without the help of my husband, who took time away from a prestigious Fulbright appointment in Norway to come home for a few weeks in the winter. He is home permanently now and it makes all the difference. And a special thanks to Lee Malerich for helping with doctor's appointments, yard work and paperwork. And thanks to everyone else who dropped by to help and for support. On the art scene, being housebound, I turned to the only available materials for inspiration: my old sketch books and my own imagination. I listened to music and books on tape as I drew. I developed a kinship with Frieda Kahlo while listening to her biography- especially when I listened to the author’s discovery of page after page of Frieda Kahlo’s notebooks being filled with patterns. I, too, became obsessed with drawing patterns - it took my mind off of the pain and seemed to calm down the over firing of nerves. The drawing featured below, however, is one of my less patterned ones and is called “Adrift.” It is a reinterpreted detail from Delacroix’s Raft of the Medusa. Or was it Gericault? I’m too fatigued to look it up now. I only know that it expresses well the feeling of drifting over the last fourteen months - drifting away from an old life and not knowing what this new world will bring. Last fall, while I was spiraling downwards, I still managed to do small paintings. Again, relying on items that were at arm’s length, I started painting a collection of old toys from the 1960's. To the left is my rendition of a vintage troll doll.