By 6:27 on April 14, 2017, Matt was on a plane heading to Duke. Yes, he’d eaten (a ton, in his words) and yes, he’d forgotten to take his Dex but he had it with him and would take it right away.
By 8:12, he’d landed. H hadn’t even woken up for school yet. Bloodwork and labs were done by 9:08. First nurse’s visit checked off the list by 10:05.
And then, another nurse came in to see Matt, to test him, and at 11:18, the bottom dropped out from our universe. Again.
I have a few dozen text messages I could share from this day. A play-by-play of Matt’s day, from morning through afternoon, including what he ate and where. There are text messages from him to his whole family reporting on the two appointments, after the first, triumphant, after the second, defeated. There are side texts between him and various family members. And then there’s a frantic one from me at 11:20 (Can you call me!!????) and I moved the conversation off text because what he’d texted was too heavy to type.
The second appointment had not gone well.
Let me backup a bit. At each appointment, Matt was put through a series of physical and mental tests. The tests changed, evolving, or devolving I guess, based on his condition, but the general outline of the tests remained the same no matter which nurse or doctor administered the test. They examined his balance, his strength on each side and in each limb, and his sensation. Then, they moved on to his mind and tested his memory and cognition and focus.
One of the memory tests asked him to repeat a grocery list of about a dozen items. I would always laugh with whoever administered the test because I spend my life forgetting something on my grocery list. He also had to remember three words (usually some version of apple, penny, and table) which he’d then be asked at the end of the exam. At every appointment, I’d silently take the tests with him, as if I could telepathically communicate the answers to him, and breath a sigh of relief when we both got the answers correct. We were fine. He was fine. Everything was fine.
But on April 14, 2017, Matt couldn’t remember one of the three words. And he didn’t do well on the simple math questions. And the crazy part is…no one in the medical world was that concerned.
What?? Here was actual, concrete proof that something was wrong. A test Matt had passed with flying colors before, now was a struggle. Be concerned! Call in everybody! I thought him missing a few questions was the most awful thing I’d heard (clearly, since I used both question marks and exclamation points in my text). My husband, who could summon up from the depths of his memory every sport statistic for every sport ever, who did math so quickly in his head that he put my AP calculus background to shame, hadn’t done perfectly. I wanted the doctors to do something, now.
They would, eventually, and the truth is, there was nothing anyone could do at that moment. But also, I would learn that missing a few words and struggling with a little math actually wasn’t that concerning. Because his answers to the tests would and could get a lot worse, and the questions would and could get a lot simpler.