Tuesday, August 23, 2016

I am the 1 in 100,000

By now, you all know that I am one of the not so lucky “one in whatever” to suffer from Lupus. That's not what this is about, though. It does have to do with my doctors and a few other things that I represent the statistical anomaly of, though. 

First, let's talk about meds. I can't take more than one of the normal medications for what I have, no matter what I have. Ya. My body does not like foreign objects and it will let me know that in no uncertain terms.

When it comes to Lupus, so far, I can only take prednisone. When it comes to infections, I can only take penicillin. That's it. Those are the only two prescription medications in my 56 years of life that I have been able to tolerate at all.

My body has rejected 99.9% of the meds I've been given in my life. And yet, somehow, my doctors feel that I'll be perfectly fine taking a medicine that kills one in 100,000 people within the first 24 hours of starting it. Yup. Because, you know, I'm so good at tolerating medicines. Ya. I think it's pretty likely that I'm the 1 in 100,000. Not a stretch there. Just another statistical anomaly.

Me, that is, I am the anomaly.

But hey, there is good news. You see, if I can't afford to kill myself with their medicine, the company that makes it has a program that insures that I can die trying at no cost to me whatsoever. Isn't that fabulous? Can you say, “experimental medicine alert?”

The doctors also felt that it was fine to vaccinate me against the flu and pneumonia, since, you know, I have Lupus and I am at high risk from dying of the flu or pneumonia. Is there a problem? Ya, kind of. Because, as I told them, shots tend to leave me paralyzed, even when I'm healthy. And I'm not healthy. So, guess who spent nearly a year of her life unable to move her arms? Yup. That would be me.

And that whole autism thing? As it turns out, with all the back and forth arguing, it has been determined that there actually is an extremely small percentage of the population impacted by vaccines in the form of autism.

Now, I never knew that was my issue. Neither did my folks. But guess what? When I think back on my childhood, I was high functioning autistic as all get out. For real. So, I spoke to some professionals, took a little pretest and guess what? Yes, I was once again, the one in whatever number. That is, it is very likely that I had autism as a child, and still have some lingering symptoms, according to certain characteristics and behaviors that I exhibited.

And no, I'm not “one of those people.” I don't know with any certainty that the reason I was completely in my own little world with no idea how to relate to the rest of the population (and still am, just to a lesser degree today) was due to vaccinations. But I do know that my Catholic school gave them out like candy canes at Christmas or pumpkin pie on Thanksgiving and that after them, I was always reeling, confused, immobile and disoriented.

Like I said, meds are not my thing.

Now comes my point, of course, which is this. And listen up, people, because: For those of us who are on the losing end of statistics, statistics take on a whole different meaning. Because it's us who suffer, who become paralyzed, who lose touch with the “real” world and yes, it's us who die.

I am the 1 in 100,000. Yup. And I am just as important as you. I am important to my friends. I am important to my family and I'm important to me! So don't spout your statistics at me, with your “so there” attitude please. Because your statistics do not value people like me.

They do not consider the people behind the low numbers. They do not consider the mothers who cry for their children, the partners who grieve for the loves of their lives or in my case, the kids who cry for their mothers because they are the 1 in 100,000. It's all about the numbers. And if you're on the low end, well, who cares about you? Because most people come out fine. Majority rules.

I am the 1 in 100,000. No, we are the 1 in 100,000. Yup. And we matter too! Screw your statistics. Because when you're on the bottom end of them, like us weirdos, they just don't matter. And neither, apparently, do we. At least not to you.

Get it?

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