The one post that helped me the most

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The one post that helped me the most

Postby MarioMangler on June 26th, 2012, 2:08 pm

A lot of people over the years have asked me, "Mario you appear to have BFS beaten mentally. How did you do it?"

Well believe me, I was once like every single newbie here. I was as scared of my body as anyone. I panicked every time my bicep twitched, I panicked every time my leg started to buzz, and when every muscle in my back was tingling and twitching, I was basically done for. I wouldn't be able to sleep, I wouldn't be able to work, I wouldn't be able to eat. And believe me, when an Italian is unable to eat, you know it is serious!

Like many newbies, this is what I originally believed when it came to BFS. I believed that when you get BFS, you are basically playing a waiting game. I believed that most people with BFS will go on to just have BFS. And then some people (the unlucky ones) will go on to develop something worse. I believed that you have to wait a while to see which category you fell into. And, as you can imagine, for me and for everyone else who is new to BFS, this realization was terrifying.

(By the way, I don't know you, newbie. But I know you are reading this and you are nodding your head. I know this is EXACTLY what you are thinking right now. God, please don't let me turn out to be one of the unlucky ones.)

So anyway this was my mentality when I first got BFS. Man, BFS sucks. And I really hope I'm not one of the bad ones. I really really really hope I fall into the BFS category and not into the "other" category. This was all I thought about and all I planned for my first two or three weeks with BFS. I started doing worst case scenario planning (ie, funeral plans) in my head. You know. Just in case it turned out I was one of the bad ones. Not likely, of course. But... you know. Just in case.

At the same time, I read every post here at aboutbfs.com obsessively. I went through the archives. I read every post here going back to 2007. I read them all. I printed out a copy of BFS in a Nutshell and kept it on me at all times. This was all I was thinking about.

And then...

One day...

Came the post that changed my life forever.

The sad thing about this post is that I don't even remember who wrote it. It might have been Basso. It might have been SuziQ. It might have been some random guy that only ever wrote one post. I have no idea. All I remember was that it was a long rambling rant about how we all need to get a grip and give up this obsession, because it will lead us nowhere. And I will always remember the sentence he led off with. It seems simple, but believe me, this was the sentence that changed the entire way I looked at BFS and BFS symptoms.

He started his post with "First off, no one here has ALS."

I remember reading this sentence and it just smacked me upside the head. Wait, you mean NO ONE here has ALS? So why was I sitting here thinking that most of us don't, but a few of us do? Is it really that simple that no one here has anything close to it whatsoever, and that we are all just being idiots?

I really don't remember the rest of the guy's post. I just remember the guy's first sentence. I just remember his entire post looking something like this:


First off, no one here has ALS. blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blahblah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah




When people ask me, "When is the first moment you realized that you weren't dying, and that you only have BFS?" I will always say it was this moment. This was the post that did it. I don't remember who wrote it, I don't remember why he wrote it, I don't even remember what the title of it was. All I remember was that this was the moment when I realized that aboutbfs.com wasn't made up of 90% of people with BFS, 10% of people with ALS. Because I know it sounds silly, I know it sounds simple, but that's what every newbie thinks when they first come here. They think it is a big waiting game until they find out which category they fall into.

Well I'm sorry to burst your bubble, I'm sorry to ruin all the detailed funeral planning you are doing in your head, but it really is as simple as _____(fill in the blank of my savior)____ said so eloquently about five years ago.


First off, no one here has ALS. blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blahblah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah blah




Enjoy your Tuesday. :D
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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MarioMangler
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Re: The one post that helped me the most

Postby Shanny63 on June 26th, 2012, 5:25 pm

:D :D :D :D ...thank u Mario...u are the voice of reason....hugs shanny
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