May 1, 2010

Rethinking the Notion of the "Controlled" Epileptic (BADD 2010 entry...)



We hear the term “controlled epileptic” and we think of a person with epilepsy who only needs to take his medicine as he has been told to do to be able to control himself and his seizure activity. Reality for persons with E. is that "compliance" or the taking of one's medication as ordered, often bears no relationship to any specific level of seizure control. In other words, just because I take my meds is no guarantee that I will stop having seizures.

Guilty of both a misunderstanding and a misapplication of the term “controlled”, we are seriously wrong about the epileptic person to whom the term is applied and about the abilities of medical science (e.g. pharmacology) to meet our social expectations.

Most of us make this mistake honestly enough. Our society, like many others around the world, places a premium on moderated behavior. We refer to the act of moderating one's personal behavior as "self control" and identify the strength of character necessary to make such a personal exertion as "willpower". When we think of someone “losing control”, we think of an individual who stubbornly refuses to make use of his willpower to control himself.

We apply this same train of thought to a seizing person with E.. We view his act of seizing as somehow related to his willpower, character or intent and equate it with either disobedience or rebelliousness. Acts of disruptive misbehavior in a public setting, e.g. temper tantrums or seizures, are unacceptable to us and people who put on such displays are “out of control”. Having to witness out of control behavior makes us uncomfortable, distresses us and sometimes angers us.

A few years ago, my husband and I went to visit a friend in the hospital. While sitting in her room, I had a tonic-clonic event, i.e. a convulsion. Nurses were summoned, my husband attended to me, and when he asked them for assistance, they called security. Later, when we were leaving the hospital to go home, the nurse pushing my wheelchair leaned over to me and asked whether "...we had forgotten to take our meds today?".

As insulting as this sounds, it is all too common a response. Persons who should know better by virtue of their professions cannot resist the notion that somehow persons with E. are simply seizing to get attention. The notion of impudent and willful seizing is utterly ridiculous.

Still, there is a desire to believe that the controlled epileptic is a possibility. The idea persists among professionals and non-professionals, as well as among persons with E.. The differance is, persons with E. understand the distinction between the medical application of the term "controlled" and the ordinary use of the word. Too many professionals continue to insist on blaming the patient, rather than admitting that the treatment is insufficient.

The conflict between what is believed to be true and what presents itself as real, looms like a challenge to authority for some people.

But what authority are we speaking of and where did it come from?

In 1951, sociologist Talcott Parsons tried to describe formally what ordinary people already seemed to be acting on at some level. Parsons published his Sick Role Theory, and in it he described two rights and two obligations apparently binding for those who become sick in our society. They are: 1) that the patient is exempt from his normal social duties because he is ill; 2) the sick person is not responsible for his illness; 3) the sick person should try to get well; and finally, 4) the sick person should…cooperate with his physician.

Parsons' theory has been worked and reworked by sociologists to try to take into account the variations not accounted for in the Sick Role Theory. Parsons wrote what many plain folks already upheld: if you are sick, you aren’t to blame and you don’t have to work if you try to get well and obey your doctor, nurse, pharmacist, etc.

Here is the seed of the authority we have been searching for in this piece: an apparent bargain between society tolerating the sick so long as the sick respond by respecting our authority and being obedient.

But, what if they don’t seem to be obeying? What if they seem to be intentionally seizing all over the place?

In 2002, I read a copy of an email exchange between university administrators concerned with how best to handle students with E. who persistently frightened faculty and fellow students by seizing on campus, sometimes during class meetings. Shamefully, the initiator of the exchange was both a Doctor of Pharmacology and of Nursing and should have understood better than anyone the meaning of "control" as related to her students with E..

She queried her colleagues in cyberspace, seeking to know if any of them were experienced with this sort of situation. The replies were varied, but most offered that the best way to handle this sort of disruptive willfulness was to treat it as a problem of student conduct or behavior and not one of disability. They suggested that an "involuntary medical withdrawal" could work constructively in the situation, and in the student’s best interests. The conspirators pointed out that this was a good strategy for skirting the Americans with Disabilities Act, as well.

A few of her respondents mentioned taking such actions at their own universities, regaling one another with their success stories: one student eventually transferred to another university altogether. Problem solved.

What they all seemed to be unaware of was that twelve years earlier, before the email exchange took place, a woman with E., named Barbara Waters, gave testimony before Congress about her own situation at a state college in Massachusetts. She was being harassed and discriminated against by administrators at her college, who wanted to use the tactic of "constructive dismissal" to force her out. She testified she was about to be expelled from school: her college administrators told her that her seizures were "disruptive" and that her presence on campus was "considered a liability" to her school [2 Leg. Hist. (Barbara Waters)].

Thanks to Barbara Waters and others for speaking up. The results have been good for us all because, since 1990, the discriminatory and harassing tactic of “constructive dismissal” is illegal.

The meanings contained within our use of language often include unstated assumptions. Delving into those assumptions requires our participation. To change how people feel about persons with E., we have to be willing to open up and share our knowledge. It is the only way to dispell harmful and simple-minded understandings from either remaining or becoming widely held social expectations.

5 comments:

paula said...

Kerin wrote:
I just went to your blog, Paula.
I really like what you wrote about "controlled" epilepsy. Putting the blame on the person dealing with epilepsy happens all too often.
I think people do that out of fear. I am hoping that as the dr increases my medication, my seizures will stop.They are already happening less often.
I plan to read more of your blog. Thanks for pointing me in that direction.

Missmelodymaker said...

Than you for telling people that. Its often not understood that you can't just take a pill and be cured.

Amanda Krzywonski said...

Hey, Paula. My name is Amanda, you can call me Mandy. I reside in San Antonio, Texas and I am 17 years old. I have been dealing with Epilepsy for 5 years of my life and it is a HUGE struggle. I have had every type of seizure thus making me a rare case. I am also blogging about Epilepsy. I just want to say thanks to you and to everyone who blogs about Epilepsy. Not only does blogging help relieve the stress, but it helps to raise awareness and share with others about this disease that I believe could one day be curable. Society does not know enough about Epilepsy and it needs to become a major cause just as cancer is. Epilepsy can be just as devastating. Thanks for what you do! If you know anyone who is curious about trying VNS Therapy, I am starting a new blog about my Epilepsy and it is including entries about the progress, side effects, and many other things that I will be experiencing with my VNS that was implanted last week. I hope it can help someone out there!

Tha Menace said...

I am a young woman who has been living with Epilepsy for 6 years. When I graduated one year later from high school I had bad migraines which became seizures, which followed by uncontrolled seizures up to 7 a day and as years went on my life stop. I lost my first great paying job and was not allowed to continue college because of my seizures in class. As a result my license was revoke. And it got to the point where I stop living I was trapped in the house because various times I was robbed and treated badly. In 2008 I decided to have brain surgery cause the seizures increased, and my life started to changed although the surgery was great it reduced my seizures but did not take them away and I was able to return to school, and I graduated with honors, and I do what I love to do sing, and write and I will be completing a alum by Nov and releasing it 1/28/11 donating 3% of the proceeds to the epilepsy foundation. Go look for me on facebook at Shariese Katrell or Katrell Musiz and share your story with me.

Sylvia said...

This is a great blog. I just came across it. I have an 18yo son who has Epilepsy as well as CP and Autism. His seizures are currently "controlled" with a combination of meds that have worked for about a year now. There was no "control" prior and we cannot be sure that it will continue. Medications are contingent on some many physiological issues (i.e. weight, metabolism, exercise, stress, hormones) that I find it insulting that anyone, let alone a nurse, should assume that it can be dependably controlled by medication. It's a crap shoot and you're lucky if you find a regimen that suits your needs for an extended period of time. Good luck in your pursuit of a predictable life. Epilepsy is sneaky, I find. My thoughts and prayers are with you as I know it is a difficult road. My son has me to advocate for him. Know that I will also advocate for you and others as well when I demand proper care and understanding for my son.