Running Update:

11/23/2020	Run		3.2 mi	30:47
11/25/2020	Run		7.1 mi	1:08:45
11/26/2020	Run		5.0 mi	43:51
11/27/2020	Run		3.3 mi	31:02
11/29/2020	Run		13.2 mi	2:12:05
11/30/2020	Run		3.2 mi	30:57
12/2/2020	Run		5.0 mi	48:03
12/4/2020	Run		5.0 mi	46:18
12/6/2020	Run		5.0 mi	48:44

Still going. 

Last month Alec and I spontaneously decided to run our town’s Turkey Trot route, even though the race was virtual this year. Todd was our excellent support staff and photographer (as usual).

My little boy!

Always wearing CTF gear

With my broken heel in this summer I lost a month and a half of training so I knew I wouldn’t hit my annual 1000 miles of running this year.  But today I figured out that I swam 59.6 miles this year, so if I add running and swimming miles, 1000 is still within reach!  It would mean running another 87.4 miles before December 31—doable, but no room for slacking.

Jane Update:

Within the next week we have a rescheduled ophthalmology appointment and a follow up dermatology appointment—both of these in-person visits had been postponed due to Jane’s quarantine.  Then we’ll (virtually) meet with our team at NIH to hear their analysis of Jane’s MRI and the plan for her treatment going forward.

NF Update:

I love JRR Tolkien’s works, especially The Lord of the Rings.  I’ve read the books over and over (even The Silmarillion!)  I’ve watched the movies dozens of times.  If I were stranded on a desert island and could have only one set of books (or one set of movies) it would be The Lord of the Rings trilogy.  It has its problems—for one, too few decent female characters—but I’m willing to forgive them for the joy they bring me.  But there is one thing in the movies that make me cringe.  This guy:

Gothmog, Lieutenant of Morgul, the Orc commander at the Battle of the Pelennor Fields, as portrayed in Peter Jackson's The Return of the King.

He’s among the worst of the worst in Middle Earth, one of its most evil characters.  He leads an army of vicious creatures bent on destroying the world of humans.  But here’s the thing—he could have NF.  Look at his unilateral facial tumors that render his eye shut and his jaw asymmetrical.  His drooping cheek and mouth.  His hypertrophied, bulbous hand.  The growth on his shoulder.  He’s got plexiform neurofibromas, as I see it.  And every time I see him I wonder:  Why is “disfigured” representative of evil? 

Legolas:  Good or Evil?

Gorbag:  Good or Evil?

Saruman:  Good or Evil?
(trick question!)

The New York Times touched on this issue in a recent article “Scary Is How You Act, Not Look, Disability Advocates Tell Filmmakers” by Cara Buckley.  It was written in response to the upcoming release of the movie The Witches, based on the Roald Dahl book, and to the villains in the newest James Bond film.  The article doesn’t answer the “why”—and that discussion is beyond the scope of this blog—but it enumerates the damage that is done by perpetuating this trope. 

"For as long as there have been stages and screens, disability and disfigurement have been used as visual shorthand for evildoing — a nod to the audience that a character was a baddie to be feared. But disability rights advocates say this amounts not just to lazy storytelling but stereotyping, further marginalizing an already stigmatized community that is rarely represented onscreen."  Even when disabled characters are featured in film, “critics say disabled characters still fall too often into predictable buckets, among them the villain or the victim that provides uplift for all, which some have nicknamed ‘inspiration porn.’”  (I’ve written about this phenomenon before regarding the novels Wonder and American Dirt.)  Not only that, but many times the disabled character is played by an able-bodied actor whose appearance is altered by make-up of special effects rather than by a disabled actor. 

Having more disabled people in the entertainment industry—not just actors, but writers, directors, producers—would help combat the stereotypes and avoid casting failures.  Representation matters!