Thank you. It’s a lovely, clean little phrase that everyone should use on a daily basis. I often have to coach my daughter to say thank you at the appropriate time: the end of a play date or when food appears before her or when someone says she’s cute (because, to this last one, she is historically more likely to respond with I know.) I work with her on this because I want her to be a successful member of civilized society, a place in which it’s important to acknowledge the efforts of others. And because, in theory, there’s nothing wrong with these two words when strung together and used to express genuine gratitude.

For me, however, thank you has become something more complicated. At this point in my ALS progression, I need help with almost everything. From the start of my day, when my breathing mask is removed, through meals which are always prepared by someone else and often fed to me, to a bedtime routine that involves being dressed in pajamas and placed back under the mask, I am uttering the same phrase over and over until it simply becomes a constant reminder of all the autonomy I’ve lost.

Of course I want to thank everyone who helps me for every single thing that they do. But imagine saying thank you out loud to yourself as you make your way through your day. It goes something like this:

Thank you (for getting out of bed)
Thank you (for putting on a shirt)
Thank you (for putting on pants)
Side note: etc. on the other articles of clothing, but you can avoid one thank you by not wearing underpants. Just saying.
Thank you (for going to the bathroom)
Thank you (for brushing your teeth)
Thank you (for washing your face)
Thank you (for putting your contacts in)
Thank you (for taking your medicine)
Thank you (for drinking coffee)
Thank you (for eating breakfast)
Thank you (for opening the computer)

And within each of those acts there may be smaller steps required to achieve completion. I might thank someone four times as they serve breakfast, because they’ve given me four different things that I needed. They deserve the thanks, and I wouldn’t want them to think I’m not grateful, but what happens to me is that the meaning of these two words begins to fray at the edges and rebraid itself into something far less attractive. Thank you begins to sound a lot like Because I can’t and that leads to I wish you didn’t have to and that leads to I’m sorry. Such strange and roundabout logic. Gratitude to guilt, in the time it takes to flush a toilet (which someone does for me.)

Sometimes when I go to Italian restaurants, I try to use my very basic Italian language skills. This means there’s a lot of grazie, and because that doesn’t come naturally to me, it often seems like overkill. Did I just say grazie five times? That’s too much and I sound ridiculous. But if I say thank you each time the server hands me something, that feels more normal.

But suddenly I’m conscious—in a grazie-type way—of how often the English version comes out of my mouth. I’ve exhausted the normal person thank you quota by 9am, and there’s so much more to come. It’s a toss-off phrase at that point.

I’m not suggesting that those of us in extreme need scrap the thanks altogether. But I’d like to give myself permission to use it less. If I—speaking specifically as someone with ALS—thank someone every time they do something for me, then I’m just a record on repeat. Am I really grateful? Who would be able to tell? I might as well say Jingle Bells when handed my morning tea. And I really don’t want to do that.

I’d like the people who help me to know how appreciative I am, without my having to acknowledge their every individual effort. I am very, very grateful. My gratitude runneth over. But it would be great to come up with a genuine overarching thank you, allowing of course, for special instance thank yous when something out of the ordinary arises. That way, I might focus on something other than my myriad needs, which would help me feel less like a burden and more like a normal person just doing what’s necessary to get through the day.

Jingle Bells.

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