Why I Left

I left the Facebook Neurofibromatosis Type 2 group that I’d been surprised to become aware of and thrilled to join.

This is a group just for people with NF2.
We would like to keep this group to just us.
We love our non-NF2 friends and family, but this group is for us to rant about our worries.

Had I read this What-Are-We-About squib FIRST and understood what this could possibly mean, perhaps I would’ve turned down the invitation.

Why? Wasn’t I all psyched to meet fellow travelers?

Oh, you betcha BUT I found that people are people are people. That is, there are folks in every walk of life who are mind bogglingly self obsessed, incapable of seeing beyond the boundaries of their own universe and are perhaps not so much able to understand the effect, the impact of their words on those outside their own milieu.

The post writer had lost her health insurance BUT was able to get new health coverage because of Obamacare—she couldn’t be turned away due to that pesky Neurofibromatosis Type 2 pre-existing condition thingie. You know, that big bad old disease that I have—the one that cost me my hearing, balance and some sight, even though I’ve had the best medical team here on Bast’s good green technologically advanced planet? Yep, that’s the disease, that's the one.

Yea—this woman won’t die now—she can still get health insurance!

She's understandably pissed though because the new plan won’t shell out for the “investigational” med which is def reducing her tumor’s size. This med has led to a restoration of some lost audio (she had a hearing loss/wasn't deaf like me. Once the auricular joy’s gone, it’s gone, baby, gone. The wonder drugs won't work for me).

I can totes understand her being pissed and scared. OF COURSE I can! And I can surely empathize with her fear of becoming deaf. OF COURSE I can. Been there, done that, wasn’t a walk in the park on a spring day.

BUT chika, in her sob city state, goes on a rant about Obama. How this is ALL his fault.

‘the fuck???!

IF I were to reply, and was feeling all diplomacy and maturity free, I’d start by asking:

"Em...sistah....you mean to say that you’re unable to read and understand the news? No, no, REAL news, not Tea Party/Koch Bros/Republican propaganda. You didn’t catch how the Affordable Care Act, while still a VERY good step in the right direction, got dumbed down by the greed wagons on the right who threw up road block after road block and NOT because they have our medical needs in mind at all. Oh my no."

Why does the “right” hate the Affordable Care Act? Read here, here and here.

Still unsure of exactly how the ACA/Obamacare is, while imperfect, FABULOUS² on a poppy seed bagel? Read Electablog’s 18 Reasons the Affordable Care Act Was the Greatest Achievement for the Middle Class Since Medicare or US News and World Report’s 10 Good Things About Obamacare.

Back to Little Miss It’s-All-Obama’s-Fault though—her new insurance plan won’t cover these still experimental drugs/treatments. That’s frustrating, scary, assholic and bad. I know.  My sister Celeste, patient five in the first test trials of this new “investigational” med, was told by her big employer-paid-for, platinum level insurance company that they would not cover these same meds, this treatment. She was in the exact same position.

What did she do? She lobbied the insurance company, went up the chain of command there, had letters from her docs, from the medical researchers and more. She went to town on their greed-headed, only-following-orders asses. Big time.

They saw the light and began covering her treatments. Yes, it was a shit ton of work and she should NOT have had to go through it but, remember mon ami, insurance companies aren’t in the biz ‘cause they want you to be happy and healthy—no, non, nein—they’re in it to make a buck. Plain and simple.

The first comment to Woe-is-Me’s post? Some drank-the-Kool-Aid-and-asked-for-seconds honey had this to say:

I was so afraid of ObamaCare for just this reason. I begged all my liberal friends not to vote for him, but they did anyway. Can you do one of those online fundraisers?

I only mention it but I’m alive because of Obamacare, I will never be denied health insurance/healthcare because Obamacare is now the law of the land.

What else I'd like to have said (had I been interested in argument or berating someone who's already in a bad way)?

"Also too, my shortsighted fellow Nf2-ers, going deaf, while fright inspiring and surely a big, fat, hard fucking adjustment, is NOT the end of the world! I survived, my mother survived. We grew and grow, adapt and continue to do so, we surfed the adversity, we discover new worlds. I’d rather hear than not but, ya know, them’s the breaks."

Going off about deafness as though it’s the most awful fate in the world—doing this on a site where many fellow group members are already mourning and trying to cope with this big loss—is, well, inconsiderate, thoughtless, massively self involved, immature and cold. You know, not good.

"Go cry on a friend’s shoulder and try to keep in mind that your struggles with insurance companies are not the black guy’s fault."

Why did I exit the second of the two Nf2 groups (there’s more than one!!!)? Some dudebro posted a link to a Rush Limbaugh vid or article. His intro text for it was rockin’ the big defensive. “It’s Rush Limbaugh but it’s not political so stop thinking that. It’s a good story...” yadda, yadda, hurl.

Please mein Freund, Limbaugh is the embodiment of dishonest, vile spirited, bully boy, assholian, attack and ridicule  politics. Pardon me if what comes to mind right now is, and Hitler loved his dogs.

So, yeah, buh-bye other Nf2 group.