Monday, June 13, 2011
by Mark Beckwith
So many people are asking so often how Megan is doing after her brain surgery. This is a great time to report, because Megan had her post-surgery follow-up on February 14 and 15, and today Kathy remarked "we need to set up our next follow-up appointment in Memphis."
Megan has been 100% seizure-free since her brain surgery. This is great news. She might even get her driving license on time.
Heh. Time flies. Here's a bit I wrote but did not get posted in a timely fashion:
So when I say “there’s something about Megan” sometimes what I mean is saying in a nice way is that she somehow missed all the classes on social cues, subtlety, discernment, that stuff. She takes things literally to a fault:
ME: I’ll be back in a second.
MEG: (completely seriously) Your time’s up.
As in: it’s not a joke, ha ha. I should have said “I’ll be back in a minute” or something more than one second. She could handle readily some exact number of seconds if I knew what it would be. She has learned hundreds of idioms essentially by wrote and concrete definition so she can route her interpretation away from “literal” to “when someone says ‘this sucks’ here’s what they mean.” You who know her know about this and it can be pretty adorable.
(And, of course, “here is the list of all the words you are not allowed to say.”)
Speaking as one of her caregivers, although it’s never a dull moment, sometimes it can be a little sad and a little frustrating. On the social cues end of it, she doesn’t understand basic tactfulness like talking about the pros and cons of various restaurants in a loud voice - while sitting in one of them. To list the things she doesn’t get would be a comprehensive and exhaustive list; the fact is, part of her basic brain function simply doesn’t exist.
I’m torn at just how much I should throw her to the wolves hoping she might learn from experiences she can gather under my standing-back, though ever-watchful, protective, standing-back eye.
Here’s an example: Today we did not get a window seat. She wound up in a middle seat and I was on the aisle. It happens, you know? If you know Megan, you know she likes her window seats. I dismissed it saying “don’t have a snit.” Then a scary thing happened: here’s the problem with having a dad who is not afraid to walk up to anybody and start a conversation - she took the initiative to seek out people on the plane willing to trade their window seat for her middle seat. You can imagine that was not enthusiastically received by others on the plane. After (painfully) allowing this to play out for a bit, and realizing she was not getting the take-home point, I finally stepped in and arranged for her to sit in a window seat.
Anyway, that’s a good example of something any parent might recognize as a “teaching moment” – how to negotiate, how to value both sides of a trade, how to initiate conversation with people you don’t know, etc. But it was kind of pathetic how unrealistic Megan’s so-sure-of-herself she’ll-walk-right-up-to-you-and-tell-you pitch was, and how people reacted, and of course, how she completely did not understand their responses, their facial expressions, nor did she suspect anything was amiss during the entire episode.
It kind of broke my heart a little.
There is some solace in a diagnosis of Non-verbal Learning Disorder (NLD) – it helps us understand why “There’s something about Megan.” But it’s also a major challenge. Now that we know the part of Megan’s brain that is supposed to do this has flat-lined (and will be removed in 19 days), we have to look at our options for getting other parts of her brain to take up the slack.
Once we figure out how to do this, we will be asking everyone we know to help. Thanks in advance.
Why is this on the Nevus Outreach blog? Because Megan’s neurological situation described above is a result of neurocutaneous melanocytosis, a complication of having a large nevus which occurs in some cases (current estimate: 7%). If you want to talk about it, email me or leave a comment.