December 22, 2012

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.

December 17, 2012

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 What if the specialist who originally made a diagnosis is no longer in practice?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!

December 15, 2012

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.

December 14, 2012

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.

December 13, 2012

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.

December 3, 2012

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.