Something Bubbling Beneath...Physician Frustration!

I know I promised not to get medical on this blog... We each have enough of that in our lives! Still, after writing for a time, I begin to notice that even as I try to write without medicalized references, I am still doing it! I am amazed at the pervasiveness of it and apologize if this has let anyone down.

Still, I mean to point out that there is a subject which bubbles just beneath the surface of our communication with each other: physician frustration, I'll call it. Frustration with the attitude some doctors have towards people with epilepsy. It can include outdated information on epilepsy, bias, or the attitude that unless an individual suffers convulsions, it isn't E.. If a medical professional can't keep up on current information with regards to epilepsy, how can we expect the general population to know the truth about the disorder?

A study of patient attitudes performed at UCLA, concluded:
Patients with intractable epilepsy communicated frustration with their continued disability despite trials of new medications. Their perceptions of the risks of the surgical treatment of epilepsy were exaggerated. Patients felt that their health care providers did not provide adequate information about epilepsy and portrayed epilepsy surgery negatively.

I'd say that's about right. I'd also comment that the education gap frequently leave persons with E. knowing more on the subject of their own illness than the doctors they see. When this is multiplied by ignorance on the part of insurers, the care we need is often denied to us.

My own internist, the one in charge of my general care and the one who reports to my insurers, told me on one of my latest office visits that I might be focused too much on my E.

Her goal at the time was to get me to start taking a statin for my cholesterol. She said that I might be focusing too much on the E. and not enough on a condition that could kill me (the cholesterol). I have to admit I am considering finding a new internist... one with better insight into E.. Apparently, she isn't listening to anything I have to tell her about E. and she hasn't kept abreast of research on E. either. And clearly, she is blissfully unaware of SUDEP...

Now, my insurers are a wholly different matter. In an effort to contain costs, they seem willfully disinterested in allowing the tests and doctor visits with specialists necessary for the maintenance of my condition. When I pushed to know why I was denied, I discovered that the individual making the decisions about my care was a former OB/GYN nurse. At least she was a nurse, right?

In some cases, the individual deciding whether or not to grant referrals for care is a kid, just out of college, whose only reference is a set of company policy manuals.

It can be fatiguing, this consistent struggle for care.

When I began experiencing "new" activity, recently, coupled with the beginnings of depression, I felt it was an urgent situation that required the attention of a specialist in E. My insurer disagreed. It was like moving a mountain to finally get an approval for a visit with an epileptoligist, and in the end, the insurer refused to pay their part. Fortunately, the urgent appearance of new symptoms was corrected by an alteration in my meds and I have been good since, but I was very unhappy with the insurance outcome.

I know I am not the only person struggling with this kind of situation, or if I am, someone please let me know how to rectify it!?

We Might Be Myshkin!!!

The Idiot

BY FYODOR DOSTOEVSKY, 1869

 Prince Myshkin is returning to Russia from Switzerland, where he has been living for more than four years, for medical reasons, at the beginning of The Idiot. “His eyes were large and pale blue, and their intent gaze held at once something gentle and saturnine, filled as they were with that odd expression by which some people can detect epilepsy at a glance.” Later, Dostoevsky describes Myshkin about to be attacked by a man with a knife:

Then all at once everything seemed to open up before him: an extraordinary inner light flooded his soul. That instant lasted, perhaps, half a second, yet he clearly and consciously remembered the beginning, the first sound of a dreadful scream which burst from his chest of its own accord and which no effort of his could have suppressed. Then conscious­ness was extinguished instantly and total darkness came upon him.

He had suffered an epileptic fit, the first for a very long time. As is well known, attacks of epilepsy, the notorious falling sickness, occur instantaneously. In that one instant the face suddenly becomes horribly contorted, especially the eyes. Spasms and convulsions rack the entire body and all the facial features. A fright ful, unimaginable scream, quite unlike anything else, bursts from the chest.

The fit saves Myshkin’s life. Unnerved by the sight of his convulsions, the attacker flees.

Myshkin’s epilepsy is both a medical problem and a metaphor for the innocence that sets him apart, an otherworldliness that contrasts with the competitiveness and materialism of the people around him. This is consistent with the sense of transcendence that often affects people (like Dostoevsky himself) who have temporal lobe epilepsy:

Amid the sadness, spiritual darkness and oppression, there were moments when his brain seemed to flare up momentarily and all his vital forces tense themselves at once in an extraordinary surge. The sensation of being alive and self-aware increased almost tenfold...His mind and heart were bathed in an extraordinary illumination...all his doubts and anxieties seemed to be instantly reconciled and resolved into a lofty serenity, filled with pure, harmonious gladness and hope... with the consciousness of the ultimate cause of all things.

Unfortunately, these moments “were merely the prelude to that final second (never more than a second) which marked the onset of the actual fit.”

Born in 1821, Dostoevsky became linked with the forces of political reform in Russia. He and a group of friends were arrested for political activity, tried, and sentenced to death. In a dreadful charade, as he was about to be executed, the sentence was commuted and he was sent to prison in Siberia. There he experienced his first epileptic seizure. Although he was a Russian nationalist, he left Russia for Europe in 1868 and there wrote The Idiot to help pay off his gambling debts. Dostoevsky’s own epilepsy was particularly acute as he was writing the novel ("Madness in Good Company: Great Literary Portrayals of Brain Disorders"  By Marcia Clendenen, and Dick Riley, 2007).

This book,  The Idiot,  was a revelation to me. I have been a reader of Dostoevsky since my teens, and this is the single book of his I have missed reading, until this year. It is perhaps the finest description of TLE I have ever come across. While the flaws related to the book have to do with other people's interpretations, i.e. "innocence", "Christ-like", etc., the whole of the tale rang very loud bells for me.  

To my own experience, the "innocence" described by critics of the book is symptomatic of a kind of  naivete that presents itself in the personality of the TLE sufferer. "Innocence" strikes me as a kind of willed state, while naivete is no more an act of will than is the E. itself, but it is present, nevertheless. 

I admit identifying with Prince Myshkin. 

I am happy to identify with him, and with Dostoevsky. 

Afterall, I might be Myshkin!!!

Humiliation: Some Field Notes from the Edge

I have been to see a new doctor, an epileptologist, and as is predictable he wants me to have an EEG. I made the appointment after delaying the decision whether or not to have the damn thing done, but feel still unresolved about the issue.
What I have determined about my feelings over whether or not to take the EEG is that I feel "creepy" about it. Why creepy and what does it mean?
Creepy because it offers to inject a kind of destabilization without offering any benefits: I have been diagnosed as a TLE, left focus. That diagnosis has been with me 52 years. This set of test results might be different (because of interpretation) from those performed years ago, resulting in either a different diagnosis, or worse, no diagnosis. This will not change my condition or make the epilepsy disappear, but it could confuse things among the people around me and make me look like some sort of lying malingerer, a kind of social cheat.
Digging deeper into the meaning "creepy" holds for me, I discovered the word itself (with its deeper implications) made me angry and brought me to tears of both fear and frustration. This revealed my feelings about the testing situation as a kind of freak show, a tortuous command performance where people will sit around and observe whether or not they can induce the ultimate show, in the form of a convulsion from me. I resent this deeply, feel terribly isolated because of it and am disinclined towards such performance. I will do everything I can to refuse having a convulsion. Will this spoil the test? Don't know, but it should be exhausting because they will do everything they can to bring me to have a convulsion or some episode they can record.
I am planning to go forward with the test because it will please my family, and my doctor; a direct fulfillment of Parsons sick role obligations. I have tried to adopt the idea that I am 'more curious about the outcome of the test than I am fearful of it', but in this most personal sense it is not true. I am afraid of being displayed like this and impersonally exposed a freak, of having my most sensitive buttons pushed for the satisfaction of others. It feels usury.
Then there is the political fallout, the "confusion". I was referring to. When I was a kid and went awhile without having a convulsion, my mother would be so pleased. If she were pleased, I was pleased. Restrictions eased, and I felt more comfortable in my own skin, more like a whole person.
     She was always counting time in between seizures, as if she was hoping it would disappear with my childhood. I grew to think that people close to me also counted the time between events. And, there was support for my assumption because after each one, the proximity to the last one is mentioned.
Persons with E. cannot help but notice the impact a convulsive episode has on those around us and it does seem logical to mark the intervals between episodes, in the same way one marks the time between contractions for a pregnant woman about to deliver.
Still, there is always the hope that those around us will just let it go, forget to mention it. I know I can recall the “last time” and the intervals in between. No one has to mention it to me. It always feels like a kind of indictment, whenever they do.