Yesterday, as I was paging through some collections of journaling prompts I own, I came across a prompt that said: “Today was a perfect day because…”. Now I would counter that not a single day in my life was perfect. That in turn reminded me of something my assigned staff at the intensive support home used to complain about. She’d say I never said I’d had a great day and rarely said I had a good day. Most days though, I said my day was “okay”. I’d regularly say a shift had gone “pretty well”. To that, she often asked me to clarify what didn’t go well, since I didn’t say it went well, but said “pretty well” instead. According to her, even if I’d had a perfect day care-wise – my day schedule was followed precisely and I’d gotten all familiar staff -, I’d still find something to complain about.
There are several things I could add to this. For one thing, I wasn’t the one complaining. I think “pretty well” or even “okay” isn’t negative. For another, I never had an entire day where my day schedule was followed precisely and I was only supported by familiar staff. I do have those days now.
Another thing is, I am in near-constant physical discomfort. This may be relatively mild, but it is present nonetheless. I am also perpetually in a state of overload. For this reason, merely going through the day takes me more effort than it would a non-disabled person. I realize neurotypical, non-disabled people cannot grasp what it is like to feel what I feel, but to label my lack of overt positivity as somehow being a bad attitude, is quite something different.
A Multitude of Musings 
Our physical discomfort can influence our mental state too.
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Agree, that was one of my points. However, since my physical discomfort is relatively mild, people tend to assume it isn’t there or doesn’t really impact my mental wellbeing.
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Only the one suffering knows.
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Well Astrid: nothing’s perfect. So why then would they want you to say
you had a perfect day? I don’t know you personally, but it might be part
of your character to be not that enthusiastic, but realistic.
If someone would ask me if something was good (food for example), then I
would say: yes it was ok, which meant that it was great. I hardly ever
would say that something was fantastic. if it would be fantastic, then
it really would have to be something special!
The only reason I could think of to say that things were good, would be
to please the person who askedit, but that wouldn’t be honest. I only
would say so, if I knew that someone really had gone an extra mile to
please me, just to let him/her know that I’m thankful.
But it must be hard to be dependent on so many different people, not
knowing who’s going to do what with, or for, you.
Roelie
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Thank you so much for validating me. I’m so glad I’m not the only one who won’t say something was great unless it, well, was. I also think most staff don’t realize the impact being dependent on literally hundreds of people over the course of the year I stayed at that home has. I’ve tried explaining it to staff like this: what if tomorrow I sent my neighbor Jimmy over to your house to do an activity with you (much less help you with your personal care), then the next day I sent my uncle Johnny, the day after I sent my aunt Mary and so forth. They all show up randomly at your doorstep with: “Hi, I’m Jimmy/Johnny/Mary/etc., I’m coming to do an activity with you.”and expect you to not just accept them in your house but be kind to them, tell them all sorts of personal things, etc. Most react that they’d be happy if someone showed up to do an activity with them. I think this either shows how friendless these folks are or how they’re immediately in their minds thinking that a care situation is different even though I was asking them to accept basically random strangers (as that’s what they are to me) to come into their house (as that’s what my room is to me).
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Some days come close to perfect but there’s always something in that day which isn’t perfect which makes it just a good day. I think that member of staff was pretty rude, you weren’t being negative.
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Thanks so much for your understanding comment. Yes, some days are amazing, but those are the exceptions or they wouldn’t be special anymore.
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