Quality of Life #SoCS

Posted on by Astrid

Hi all. I haven’t written a blog post in nearly two weeks, since I’ve been struggling quite badly. However, I saw the prompt for Stream of Consciousness Saturday, which is “starts with Q”. Immediately, the word “quality” and, derived from that, “quality of life” came to mind.

I regularly write about this concept when discussing myself as a former preemie living with multiple disabilities. That’s not what I mean this time though. This time, I mean real, day-to-day quality of life. I’ve seriously been on a quest for a more meaningful life.

You might remember me talking about the cup of green tea I was allowed to have one evening. I said back then that it’s normal to choose when you want tea, so most people will not be appreciative of it. I was. However, as I spiraled further into depression, this cup of tea became the metaphor for how bleak my life is, actually.

It could be a lot worse. It was, back in the mental hospital, where, though I could grab food whenever I wanted (or at least I did), I spent most of my days lying in bed or surfing the Internet. Most of my fellow residents also have even less autonomy than I do. And yes, I know they’re severely intellectually disabled, but quite frankly that’s not an excuse. Just because you’re used to well-intentioned others making every single decision for you (and they are used to it as well!), doesn’t mean that’s how it’s always supposed to be. Or how it should be. Like I was at the time very grateful for the cup of tea at 9PM, that’s not how it always should be. That is, of course it’d be good if I remained grateful for a cup of tea, but in real life, I should be able to make the decision whether I want a cup of tea myself.

Unfortunately, I have a ton of ideas to improve my quality of life and gain more autonomy, but these don’t get to fruition. The reason is in part the fact that an idea has to be put into practice and executive functioning isn’t my best quality. Another reason is resistance from staff, either overt or covert.

I could write a book on all the ways staff have verbally, physically and in other ways hurt me under the guise of being human and having emotions too. Or conversely under the guise of safety for the group or that being the reality of staff-client relationships. But I won’t.

I’ll end by saying that, at least, on Tuesday I had a good day cooking curry for my side of the home. That’s what I mean by day-to-day quality of life: having the ability to prepare my own food, for example, or choosing what I’ll have for dinner. Of course, the other residents didn’t have a say in my choice to make curry, but they did appreciate it. We’re a long way from people in long-term care actually having meaningful lives, but this felt like a tiny contribution.

23 thoughts on “Quality of Life #SoCS”

  1. Everything starts with on small step and it sounds like cooking curry is one of them. Is that something that you could make into a weekly activity? Maybe that could expand into a cooking demo or instructions. I know these are simplistic thoughts for a complex situation, but it’s a thought.

    I hope you can continue to come of out of your dark hole and get more coping strategies for not going back in so deep next time.

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    1. Thanks for your kind words. My staff have been saying for like half a year that they want to incorporate a weekly cooking activity into my day schedule, but this for some reason doesn’t get off the ground. Part of the reason is the fact that some staff don’t know how to support me when I get frustrated and as a result they’d rather do simple activities with me like dice games during which they know I won’t get distressed. Then again, these are actually extremely boring activities.

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  2. Reading this made me sad, sad that you are feeling like you are, sad that you are not the only person to feel that way and sad that it’s not an easy fix. Finding the motivation and energy to do stuff to change and improve one’s life isn’t easy, all we can do is take life one day at a time and maybe at the end of the day sit and think about any little thing during the day that made one smile, giggle or just felt right.

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    1. Thank you. The problem for me isn’t motivation but organization and the fact that many staff give up on trying more meaningful activities like cooking or polymer clay with me as soon as they notice me getting distressed.

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  7. Sending positive thoughts your way. I like that you’re identifying things that make you feel better. Don’t give up on asking for what you think will help you function and progress.

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  10. Good to see your post, I was thinking it had been a while (of course I am behind in reading post too). I am sorry you are struggling, but like others have said, writing about it and doing things like cooking for others are good things to do. Remember if it is a particularly difficult day and all you did was get out of bed, on days like that it is an accomplishment! Don’t set the bar too high and take care of yourself!

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