Monthly Archives: February 2016

Can Anybody Hear Us?

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I’m a pragmatic person.  Generally speaking, I think I’m pretty reasonable when it comes to expectations. Actually, I tend to “aim low” in terms of expectations.  It minimizes disappointment.

But here’s the thing, every day a TV commercial pops up for a new medication. I realize that medical conditions, like many things in our society, are commoditized.  It’s the law of supply and demand, so when you are affected by something rare, you aren’t gonna be somebody’s cash cow.  That doesn’t make it any less frustrating though.  Of course, I wouldn’t want to take precious dollars away from treatments for cancer or diabetes or Alzheimer’s or any destructive disease that impacts (way too) many people.  But when I see an ad for toenail fungus medication I get pretty pissed off.  And if I’m being really honest, the erectile dysfunction commercials annoy me as well.  Granted, I’d be pretty bummed out if I had toenail fungus, but come on?  As to E.D., well you know that there are armies of research doctors spending millions of man-hours on that one.  (And yes, I used “man-hours” on purpose.)

The thing is, Trigeminal Neuralgia, or any of the “algias” are so damn devastating.  And while the term “Suicide Disease” was coined in days past when there were no treatments for TN, it still takes people’s lives.  Much as I want to downplay that name, some of us TN Warriors get to a point where they can’t take it anymore.  It is a tragic and catastrophic decision that destroys everyone in its wake.  And TN takes our lives in other ways.  Okay, not to the extent of a terminal illness, but differently.  We have to stop working.  We can’t be the parent or spouse or sibling we want to be.  We see our social circles shrink.  Our health deteriorates physically and mentally.  It’s the end of the world as we know it.

There are entities that do serve the Trigeminal Neuralgia community, most notably the Facial Pain Association, and I know there are dedicated research scientists trying to find a cure.  I just can’t help but feel that it’s not enough.  I mean, TN is considered to be the most painful medical diagnosis known to man.  You would think there would be more doctors trying to take on that challenge.

Imagine this scenario: You’re a research physician at a cocktail party making small talk with some other people.

Person 1:  “So, what do you all do for a living?’

Person 2: “I’m an accountant.”

Person 3:  “I’m a graphic designer.”

You:  “I just cured the most painful medical diagnosis known to man.”

Aaaaaand… mic drop.

Seriously, why wouldn’t any doctor like that to be his/her legacy?

*Sigh*  I wish there was a way for me to get famous so that I could be the advocate we all need to spread awareness.  (Trust me, this blog ain’t gonna be that ticket.)  Hopefully one day soon someone will take up the cause of TN in a big way.  Until then, I guess I should just be happy that I’ll never have to worry about toenail fungus.

 

 

 

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A Difficulty With Words

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(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful medical condition known to man.)

Question:  What’s the most difficult word in the English language?

Answer:  No.

A little background.  I lammed it out of Chicago and am now at my dad’s house in Florida.  I can’t say that it has helped with the pain too much (i.e. I’m miserable).  But if I’m going to be in pain, better it be someplace warm.  My uncle is also here visiting.  My dad owns a small plot of land that we call “the farm”.  It’s on the outside of town and right now, a homeless friend of my dad has kind of homesteaded the place and has created a little camp site (that’s another story entirely).  Yesterday my dad and uncle were going to go out and check on things which prompted this conversation:

Dad:  “Hey Sal (me), you want to go out to the farm with us?”

Me:  “I don’t think so.  It’s way too windy for me to be standing in the middle of a field.  I’ll just stay here and write.”

Dad:  “You sure?  It doesn’t look too bad out.  And if you’re in pain, we’ll leave right away.”

Which gets me to my point.  I think many of us try to be polite and not make waves or seem too harsh.  I should’ve just said, “No,” but I didn’t want to be rude, and I felt I had to provide some explanation.  And even that was somewhat tempered.  What I could’ve said was, “No.  Right now I feel as if a giant claw has clamped onto my face like in one of those vending machines at Denny’s where you can win a stuffed animal.”

Wait.  Even that’s not right.  I should’ve just said, “No.”

For such a small word, “no” seems to be one whose definition is better in theory than in the real world, especially when you have a chronic illness.  You, the affected, feel like just saying a simple, “No,” or actually, “No, thank you,” is an insult to the asking party.  That party, in this case Dad, thinks that “No, thank you,” actually means, “Well, I might go if you keep giving me reasons why you don’t think it will be a problem.”

And so we dance.  Me, restating my concerns over and over again using different words.  And Dad, continuing to give me reasons why I shouldn’t be concerned.

Though I know my dad cares about how I’m feeling and doesn’t want me to get worse, he clearly doesn’t understand.  He doesn’t understand that even on reasonably good days I am in more pain than I outwardly show.  He doesn’t know that when you have TN you are constantly assessing your surroundings for possible pain triggers.  He doesn’t realize that having to “prove” why I don’t want to do something makes me feel as if he doesn’t believe me.

And it’s not just my dad, of course.  Other people do it too.  “Come on!  We’re just going out for one drink.”  “I know the wind chill is eight hundred degrees below zero, but it will be nice and warm in the theater.”  “You don’t even have to dress up.  Just throw on some clothes and we’ll go.”

I just want my dad, or anyone really, to accept that when I say “No,’ it’s a well thought out answer, one that I often don’t want to give.  I like to do stuff.  Go to the farm or the movies or an outdoor art festival.  But my saying “No” is an indication that I, more than anyone else, know my limits.  But I continue to have hope for those days when I can say, “yes” and worry that my declining invitations will end up in a decline of invitations.

So that brings up a couple more questions.

Do I want people who ask me to do things to keep prodding and cajoling until I say, “Yes”?

No.

Do I want people to stop asking me to do fun things like concerts or shopping or dinner:

No.

You see?  It’s kind of complicated.