March 27, 2008

The Hardest Part of E.

There are obvious reasons persons with E. have trust issues---the longer they have E., the more complex these issues seem to become. This may be the hardest part of living with E., overall. I find I am unwilling to trust others---this springs to mind as  the hardest part of E. Let me explain: I trust my husband, because he has been by my side, seen my most terrible convulsions, cleaned me up afterward, and still loves me.

But, contrast this single extension of trust and  confidence I willingly extend to my husband with my responses to others in my world, those who wear titles suggesting, by social convention, they should have my trust, and the world seems a little bleak for me because these titled folks frequently seem to fail my trust.

Doctors---I have seen many of them in my lifetime and I fail to see any advantage in giving any one of them my trust. Often, this is because they seem a little hazy, or downright ignorant, about my condition. Since I understand my condition well, they become resentful, even antagonistic during the treatment process. They question whether or not I really have E. in the first place, they develop reasons for running the same tests over and over again, then they cannot decipher the results of those tests, once they have them in their hands.

The general public: these are the ones who question whether or not I am retarded, whether or not I am criminal, whether or not I am contagious. Some suggest to me that my E. stems from past-life sins of a horrific nature, or that I might benefit from an excorcism to rid me of my condition.

Drugs, surgery, alternative methods all eventually reveal something dangerous to me about the ones who want me to use their methods. For example, I have been periodically informed that chiropractic can cure my epilepsy. Yes, a few good, bone-cracking sessions with these certified quacks and I will be right as rain. No thanks.

Have I just settled into my own, comfortable cynicism or is it experience that informs my attitudes?

I say it is experience. For example, when one prevails upon the medical establishment for help, then finds the individual doctor in his office, looking up Epilepsy in his reference books, one might feel let down, perhaps just a little.

Or---let's say one seizes in the presence of a nurse, and she tries to shove her wallet between my teeth? It is apalling to me how many folks still believe this to be proper first-aid for a seizing individual! 

This would indicate to me that public education has not reached enough folks, and so a better job needs to be done. What baffles me is the notion that folks have learned the Heimlich maneuver for a choking person, but they still don't know enough just to roll us to one side until we finish our seizure??? Or that it is not necessary to call paramedics for Every seizure, but only if they last longer than 10-15 minutes...

Trust is the hardest part of living with E.---or the lack of it! 

(The Symbol to the right is a Chinese character for "Trust".)  It represents
a goal, something to strive for. 


CJ said...

I share your distrust of doctors. Just because you have MD after your name does not mean that you have all the knowledge, understanding, and answers to every problem.

At the ER after my daughter's 1st tonic clonic I was told that she did not have a "seizure" because she didn't lose control of her bodily fluids. Which if you follow that line of thought then there is no such thing as absence, atonic or myoclonic seizures because none of those tend to present with loss of bodily fluid either. I'm sure the nearly 3 million American Epilepsy Patients will be relieved to know that they don't have "seizures". It was a ridiculous statement by a "professional" and we wonder why the public hasn't gotten the correct messages regarding Epilepsy?

Great Post! And thanks for letting me join you with my own rant.

Anonymous said...

Anonymous said...
If there is one thing that someone like me can understand it is the trust issue.i have had epilepsy for 31 years and there have been people that have had no experience with anything resembling epilepsy,and yet they tell me about them understanding what i go thru.lets see, have they ever in their life woke up to strangers gawking at them?have they ever sat in fear for something that us epileptics know like the back of their hands?i know that there are people that are truly trying to understand what and why seizures happen.there is no doupt.then you have these so-called educated people that have very good-paying jobs that take a wrecking ball to your confidence level. oh well

Philip. said...

Hi Paula,

I'm so glad you are blogging, your posts are so interesting!

I've had a few thoughts about doctors and how they can become desensitised to peoples' conditions. I think that they sometimes forget they are dealing with other human beings.

I once had a consultant who decided my leg needed amputating; instead of using his bedside manners he just came out with "we'll have to take your leg off!". To say I was shocked was an understatement!! However, I had the last laugh; I made him wait two years before he did it - LOL (probably only funny to me).

However, one of my past consultants was a chap I went to school with. He was excellent and saved my life!! I will always owe a huge debt to him.

So, I would say to try and trust doctors as much as you can. They may sometimes be annoying, but generally, they are here to help.

Catch you later :-)

Diane J Standiford said...

Trust is a big issue for most of us chronically ill people. Sometimes I just substitute faith.

Sherry said...

I can totally relate to the shoving something in your mouth issue. When I have to stay overnight in a hospital the nurses ALWAYS come in and tape toungue depressors to the wall. I tell them to take it down and make sure that everyone knows not to put anything in my mouth. And I wish I knew how many times I get the response "oh we don't put things in your mouth anymore". Hello??? Then why are you taping it to the wall??????!!!!!!!