M is for Manuals—Notes for Whoever Draws the Short Straw

 “Manuals?” you ask. How does that word fit my theme for the April A to Z Blog Challenge? At first glance it might seem like a stretch, considering I’m supposed to be writing about the humans, habits, hidden joys and heartaches that shaped my world. But this post is my attempt to write a manual for my own care—just in case, near the end of my days, I can’t communicate with the caregivers and family around me.

Yes, I know none of us can orchestrate how others will treat us when good health leaves the building. But that doesn’t mean I can’t try.

This isn’t my first rodeo with manuals. After my husband’s stroke, I volunteered at a large website for stroke survivors and caregivers. It didn’t take long to work my way up to the management team, even had a seat on the board. With so many people trying to navigate chat rooms, blogs and forums—many of them brand‑new to computers—I asked my boss if I could write a how‑to manual.

And I did. Clear, step‑by‑step directions for people who were overwhelmed, grieving, hopeful and learning to double‑click all at the same time.

Meanwhile, on the home front, I wrote another manual—this one for how to care for Don and the dog if something happened to me. Neither of them could talk, and someone needed to know things like, “Don’t feed them spinach unless you enjoy cleaning up vomit.”

Some might say it was busywork, a way to feel in control while life spun wildly out of it. Maybe. But it was definitely true that I hated the way people made assumptions about disabled people like Don. Too often those assumptions included a belief that a lower IQ comes bundled with a wheelchair and a limited vocabulary.

Depending on where in the head the stroke occurs, that might be true. But my husband’s stroke was smack dab in the middle of the left frontal lobe which is where speech sentences and grammatical structure is produced, causing what is known as non-fluent aphasia aka difficulty getting words out. It’s akin to having a car where the motor and wheels work fine (Don’s brain and lips) but the transmission that makes the wheels turn (or the words to come out) is broken. He knew exactly what he wanted to say but in the 12 ½ years after his stroke and after six years of speech therapy his vocabulary never increased beyond a core of 25 hard earned words.

But his intelligence was untouched, and his desire to communicate never dimmed. He was a born storyteller and he found a way to still be one. That way was to put me in a position where I had no choice but to explain what was on Don’s mind. Like the day he parked his wheelchair right in front of the door to a cigars and cigarettes store and he wouldn’t let anyone in or out. In a militant way only an x-smoker on a mission could do, he held up three fingers while repeating the word “three!” over and over again. This forced me to tell Don’s story to the gathering crowd about how he used to smoke three to six packs of cigarettes a day and he blamed the habit for earning him heart by-pass and a stroke.

 His special shorthand for all he'd gone through since the stroke was to hold up two fingers and say the word, "two then look up me which was my cue to explain that two neurologists had told the family he’d be a vegetable for the rest of his life. The universe response was usually the same: “You sure fooled them!” And it was true.

To friends and family who spent time with Don after the stroke, it was clear that despite his disabilities he was still the same, intelligent and caring person he’d always been. Before the stroke, we used to tease him that we should number his stories because we all knew the by heart. After the stroke that's exactly what he did.

Only someone who knows you deeply can speak for you when you can’t. I don’t have that person in my life, which is why the idea of a manual keeps tugging at me.

It’s embarrassing to admit I’ve already written a 'manual' for what to do after I die—complete with pictures of who gets what—so why not take it a step further and write one for any future caregivers who might cross my path before I kick the proverbial bucket?

A few sample entries:

• Don’t call me sweetie or dear.

• You can never feed me too much ice cream, but never—ever—try to feed me liver unless you enjoy having it spit right back at you.

• Don’t talk religion at me. You take care of my body; I’ll take care of my soul.

• If you set the TV to an old‑people black-and-white channel, sports, or a game show, I’ll consider it waterboarding. If you must leave me with a fictional character as a distraction when you leave, choose the Hallmark Channel so I can binge on happily‑ever‑afters. (I’ll explain why when we get to the letter R.)

So that’s the starting bones of my manual—I’ll finish while I can still boss people around. And if it also reveals a few of the humans, habits, hidden joys and heartaches that shaped my world, then I’d say M for Manuals earned its place in the alphabet. ©