April 10, 2013

"Fail First"...What a Really Bad Idea!

 The notion that persons with epilepsy should be asked to "fail first" is ludicrous. Since finding a drug or combination of drugs that will control our seizures is, in essence, already a "fail first, then second, then third" proposition. To ask us to give up seizure control just to save a few dollars is a dangerous idea.

      Yet, insurers are pushing hard to get lawmakers to invest in the notion that it only makes financial sense. After all, our drugs are really expensive. Some of the older ones are cheaper, but the newer ones are just really costly. I have already taken and tried nearly all of the drugs for anti-seizures that are out there. I am unwilling to go back and begin again. They were crap, gave me terrible side effects, and most importantly did nothing to control my activity.

      I have been quite well controlled on the meds I currently take. They do a good job suppressing tonic clonic activity. While they may not work the same for each of us, they work for me! I currently take Carbatrol and Lamictal, brand names only for each. I tried the generics and there was poor control, so I am taking the brand names for each of these and having great success.

       Some folks are under the impression that epilepsy, as the 4th most common neurological condition in the nation, is not terribly serious. More of an unpleasant condition, but nothing one could die from. So, if it isn't "life threatening", what could be the harm? Eventually, one would get to the right medication(s), surely. And, while the epileptic is searching through the formulary for a drug that will work, he or she is still having seizures.

       I am reminded of a friend, who, on his diagnosis of epilepsy, began the search for a good drug. Unfortunately, he never got the chance to find one. Out shopping at a local mall, he began to feel odd, so he went to the men's room. He was overcome by a seizure, collapsed in the stall and died on the floor, alone.

      Yes, we can and do die from epilepsy. Seizures are dangerous. It doesn't take many of them to be lethal. "Fail first" looks to me like "wrongful death". The fools in Washington State, Maryland and other places should hear from us all, with gusto, warning them against the dangers of this foray into financial frugality. Telephone, email, snail mail letters of complaint. Send them this post if you like... They must not do this!

February 13, 2013

Invisible Pain and Suffering

When I went searching for images of pain and suffering online, I was surprised to see that many of those images had to do with tears, oppression and isolation. Others, more disability-oriented, had to do with wheelchairs, crutches and braces. My own takeaway was that everyone can feel the effects of depression, isolation and oppression and attribute both pain and suffering to these conditions, but only some know the like of physical loss that renders them confined to chairs, braces or crutches. The image above is an illustration from "Guinevere's Jealousy" by Tennyson. It offers to us the idea of secret suffering as a kind of etiquette of pain's expression. What the lady is in pain from, we cannot know and I do not know the image maker. I will include credit if one of you readers can supply me with the information I need... But, the notion of "suffering silently" for the sake of those around you, is not new. And it has been a burden particularly for those of us with "invisible complaints" that has been difficult for us to shake and even more difficult for others to accept. Once an individual begins to speak aloud about epilepsy or any other ailment, there is a powerful inner voice suggesting it was not a good idea to bring it up at all. 
     Many of us are keenly aware of a kind of barrier that persists, keeping us from excising at least some of the crushing pain and suffering we feel through the act of sharing. While it has long been thought that secret pain is the rule, we have learned that secret pain can twist and warp personalities, leaving some of us more vulnerable to others. In the image below is a good articulation of the landscape the artist imagines of secret pain. 

     The individual expressed by the central human head, is in agony, the crushing pressure of two screws working to compress his head. Tryng to relieve the pain, He opens his mouth to speak, but finds only a grimace at his disposal. The clock tells us that the individual has endured this condition, and will endure this condition over time. That it will end and begin again, interminably. The artist (who, again, I cannot know..) communicates at the top of the work that there is a barrier at the edge of this territory of pain that cannot be crossed. He even suggests, by the prominent placement of a Death's Head, that the barrier could represent thoughts of death as an escape from pain like this. As you examine the piece, you see other smaller images and note that the shape overall is like a cloud, or a fog of pain. This image is no fairytale representation. It is edgier, to be sure, But instead of suggesting "silence as etiquette", it suggests fear of pain and suffering and a yearning to end it by any means. That this is the modern etiquette of the already invisible disabled, to suffer silently, then when it becomes too much, yearn to die. 
     David Brooks, in his New York Times op-ed, "Death and Budgets", suggests that one way to cut Medicare costs is to impute to the disabled a sense of a "duty to die", for the good of the nation, rather than to go on existing as a mere "bag of skin" costing millions to sustain. Granted, Brooks was inspired by a friend with ALS whose stated desire is to die before his condition renders him incapable of doing the things he considers significant to living life, and then apparently Brooks coupled this inspiration with the thought that if more folks would think like this, it could be a budgetary windfall for the nation's health care systems. His intention seems to be that we could lighten the load for everyone else if we encouraged the thought that the ill should consider dying more quickly when it is clear that they cannot be cured. 
     So, referring back to the second image, this becomes a pressure, like the screws represent, on the invisibly disabled. Epileptics have been keen to keep their condition secret for generations. Many of us still will not speak about it, and with pressure like this suggestion that we have a "duty to die when we cannot be cured" the freedom to speak out becomes more difficult. 
    Rhead, George Wooliscroft & Louis. "Guinevere's Jealousy" from Tennyson, Alfred. Idylls of the King: Vivien, Elaine, Enid, Guinevere. New York: R. H. Russell, 1898.