Virtual Dystonia Advocacy Day was This Week
Earlier this week (Wednesday, March 25, 2020, to be exact), I participated in the socially-distant, online-only version of Dystonia Advocacy Day.
I’m interrupting my ongoing parody/mash-up of King Lear and The Big Sleep to share the email I sent to both of my state senators and my district representative, as part of the big effort to raise awareness.
And it’s annotated in bracketed bold text for your edification! 🙂
Dear [Fill in the Name]:
I’m a writer with dystonia caused by a stroke I had in 2004. As such, not only has my typing speed slowed to a crawl, but the fingers of my left hand have literally been dislocated very slowly over the last 16 years, like an extended torture session. I know this from reviewing my medical records. And it’s a reality I’ve learned to acknowledge and live with every day.
[Get right to the point in as visceral a way as possible. Think that opening paragraph will “hook” them?]
I’m writing because my condition is an example of a rare type of dystonia, which is itself a rare condition.
[It’s REAL fucking rare.]
One of the biggest problems with dystonia is that it cannot be thoroughly explained and/or treated with one simple explanation or fix.
[So I won’t bore him/her with too many details.]
There are different reasons people get dystonia, including genetics, brain trauma, as a side effect of medication, and limb overuse. Much of what goes toward dystonia research has nothing to do with the problems of those who have the rarest forms of the disorder.
[In law school, they’d call this identifying the issue.]
My condition is so rare that I’m treated at NIH, because no one else can adequately do the job.
[Yeah. It’s a really, really rare disorder.]
While I recognize that a certain amount of cost-benefit analysis will go into these decisions, I remain hopeful that those of us with the rarest of health problems won’t be left out in the cold.
[I’ve worked as an attorney for the Feds. I know how the sausage is made.]
So, what I would ask is that you:
* provide NIH with at least $44.7 billion in funding and takes steps to see that research into the various types of dystonia continue;
* keep “dystonia” as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program for FY 2021;
* provide the CDC with $8.3 billion in FY 2021, to help support research into traumatic brain injury and dystonia;
* ensure patient rights under the Affordable Care Act, including prohibiting discrimination against pre-existing conditions, establishing out-of-pocket maximums for covered services, and prohibiting annual and lifetime caps on insurance coverage; and
* take steps to have “dystonia” added to the list of impairments within the regulations that govern whether people qualify for Social Security disability benefits.
[In litigation, that’s known as your request for relief. Note the use of bullet points, for easier reading.]
Thank you for your consideration.
[Quit reading this message and do something. Please.]
Best,
Debbi Mack
PS: Did I mention I used to work with the Office of General Counsel for the Social Security Administration? Defending the denials of disability claims on appeal? Um …
Blogger’s note: I haven’t felt this much like a lawyer in ages! 🙂
Now, let’s face it. We can’t all be Greta Thunberg or Jane Fonda, but if you want your government to listen, quit bitching on social media and put some time into writing to your Congressman.
And fucking vote! For fuck’s sake. 🙂
I’ll continue the Shakespeare/Chandler mash-up/parody next time! In the meantime, I have a large number of invitations from companies with my email address to attend online events I plan to ignore delete without reading/attend/listen to vaguely.
PS: Please mark this as Exhibit A! 🙂
Res ipsa loquitur.
Originally published at http://randomandsundrythings.wordpress.com on March 27, 2020.
