I have a soft spot in my heart for Hallmark movies, particularly those where everyone overcomes seemingly insurmountable odds and lives happily ever after. The one-legged man wins the marathon, the puppy travels 500 miles through the dessert to make it home for Christmas. The Hallmark gene must be recessive because no one else in my family seems to share my predilection for sappy and predictable made-for-movies endings.
A couple days ago I watched Rogue One with my son and husband. Ok, I 90% watched it. I fell asleep fifteen minutes before the end (SPOILER ALERT) which turned out to be a very good thing. Because I don’t like movies where all the good guys die. And no, I don’t care if they went down in a spectacular blaze of hero glory. That is still not a happy ending.
At least Rogue One was made up. I could take some consolation in the fact that no live droid was harmed. Not like those “Based on Real Events” movies. You gotta watch out for those.
Years ago, while I was visiting for Christmas, my Aunt Charlotte oohed and ahhed about a new movie in the theaters. She demanded I take my new husband to go see it NOW. “It’s a true story, ” she said. “It’s so inspiring,” she said. She even pushed a twenty dollar bill into my hands to cover the tickets.
After, I didn’t speak to her for two days.
Let’s just say The Perfect Storm is not my kind of holiday movie.
And yet… that’s exactly where I find myself now.
If you zoom in on an MRI of a stroke patient’s brain, it’s not unlike the meteorological report of a natural disaster. There’s an epicenter. There are waves of potential destruction. There’s a forecast.
Aunt Charlotte’s forecast is not good.
Three weeks ago Charlotte had a left posterior ischemic stroke at work. The eye of the hurricane hit, ironically, in her center for vision.
It took quite a while to get a full picture of exactly what was affected. When I showed up in the ICU 24 hours later, Charlotte was pretty much her regular self. She was talking, mostly about how bored she was, how she wondered what would happen now. Sometimes she said things that didn’t make much sense. (She favored interjecting the words “invoice” and “revenue” in place of more appropriate nouns, kind of like half her brain thought she was still at the office.) She had right-side “weakness” which is some medical misnomer for not being able to feel the entire right side of her body – but she was able to move both her arm and her leg. She appeared to have loss of peripheral vision in her right eye. It was scary, but the neurologist thought all of it was recoverable, except perhaps the vision.
This is what we’ve learned since then:
- Charlotte has a visual cut in the right side of BOTH eyes (so, she can only see out of half of each eye) as well as double vision. For Charlotte, the world stops about the center of her nose.
- She has right side neglect. She can move the limbs on the right side of her body if she’s looking at them (which is difficult, see above) but she has no feeling so she doesn’t automatically recognize them as part of her own body. This is particularly frightening when her right arm decides to curl up toward her chin – to her it seems like a strange person is in bed with her, trying to cop a feel. She cannot walk, she cannot stand, she cannot use her right hand to hold on to anything or cut her food. Sitting in a wheelchair is exhausting.
- Her memory, especially short term, is largely affected. She doesn’t remember from one moment to the next that she should push the red nurse button if she needs help, making it feel impossible to leave her alone for any amount of time. She doesn’t always recognize people she’s known for decades – or she recognizes them, but forgets she’s known them long. She calls Grey, “the boy”. She calls me by my mother’s name.
- She has a strange case of aphasia. She can carry on an in-depth conversation about complicated topics (politics, technology, etc.) but she cannot identify simple household objects (a cup, a hairbrush, a toilet). What makes this unusual is that the problem is not with naming – it’s not that the word is on the tip of her tongue but that she doesn’t recognize the objects at all. When her dinner tray arrives, she doesn’t recognize anything as food until you name it for her – “You have pot roast, potatoes, green beans…” at which point she picks up a fork and goes to town.
- She also has pure alexia. She doesn’t recognize written language. It’s not that she’s just forgotten how to read (which would be bad enough for someone whose Saturday routine includes picking up 10 new books at the library) but she doesn’t recognize letters. Show her an “A” and she’ll say, “I don’t know, ‘W”? However, she does know that that “A” is the first letter of the alphabet. She can recite the alphabet, but she still can’t identify that letter as A. She can also verbally spell words, without any understanding of what she just spelled. The speech therapists are baffled, to say the least.
There’s more, but that’s a good starter list.
Tuesday, at the family meeting, the team told everyone (including Charlotte) that they see very little progress, and they are not optimistic about recovery. They are recommending discharge tomorrow to a Skilled Nursing Facility. That’s a euphemism for a nursing home. Charlotte, despite being unable to identify a toothbrush, is fully aware of the implications. “This makes me feel hopeless,” she told them.
Yes. Me too.
It’s that scene at the end of The Perfect Storm – the boat is being thrown around in the ocean – you’re in the thick of it with the crew, cheering them on, leaning forward in your seat to help the ship crest that wave…
And then the shot pans out.
And you see the enormity of the situation. A ten-story wave. A toy boat.
It doesn’t much matter how formidable that ship looked as it headed out to sea. It doesn’t matter what the captain had planned – being the oldest working executive, collecting a museum’s worth of modern art, championing the non-profit arts sector one board and one donation at a time.
That wave is huge and that boat is tiny and it’s going to take some serious movie magic to turn this thing around.
Except this isn’t a movie.
No one has to pretend to be scared. No one has to act heartbroken. No one has a script.