The Dreaded Questions
There are two questions that ruin my day:
1) How are you?
2) How is your mother?
Most days I try to stay focused on the moment and work on my to do list. I think about my goals and hope that if I keep working towards them, someday I will be in a place I feel good about. As long as I stay in this space, I'm OK even happy at times. But then that space is blown by one of the two dreaded questions.
When I get question #1, I have two choices. Just lie and say I'm good (and that doesn't come natural). Or tell people I haven't slept in ten years, had sex in way too long (and that sounds whiny). I have like two friends in the county who I see a couple of times a year and spend the rest of my life in front of a computer or with a woman who can't talk. I never have any privacy but I never have anyone to talk to either. I work 14 hours a day six days a week and 8 on Sundays. I'm fat, out of shape and have a skin problem on part of my left foot that is driving me crazy.
When I get question #2, I feel like it's a slap in the face. When I finally get out of caregiving or computers and spend time with a friend or acquaintance, I don't want to even remember that my mother exists. And how should she be? She's severely disabled but healthy as a horse. When she dies, everyone will know because I will have a life again and friends and maybe even a lover. She can't talk, go to the bathroom or make a phone call. She doesn't know how to roll around in her wheelchair, so she's basically a brain trapped inside a body. This is how she was in the year 2000 and 2005. This is how she is today. Disabilities don't get better, so please stop asking.
Least you think I'm off the deep end, I do recognize that in polite society asking how people they are is the polite thing to do. Yet when others do it to me, I feel that the asker lacks even the most basic understanding what caring for a person with this level of need entails and how their questions make me feel. (Like crying in case you care)
1) How are you?
2) How is your mother?
Most days I try to stay focused on the moment and work on my to do list. I think about my goals and hope that if I keep working towards them, someday I will be in a place I feel good about. As long as I stay in this space, I'm OK even happy at times. But then that space is blown by one of the two dreaded questions.
When I get question #1, I have two choices. Just lie and say I'm good (and that doesn't come natural). Or tell people I haven't slept in ten years, had sex in way too long (and that sounds whiny). I have like two friends in the county who I see a couple of times a year and spend the rest of my life in front of a computer or with a woman who can't talk. I never have any privacy but I never have anyone to talk to either. I work 14 hours a day six days a week and 8 on Sundays. I'm fat, out of shape and have a skin problem on part of my left foot that is driving me crazy.
When I get question #2, I feel like it's a slap in the face. When I finally get out of caregiving or computers and spend time with a friend or acquaintance, I don't want to even remember that my mother exists. And how should she be? She's severely disabled but healthy as a horse. When she dies, everyone will know because I will have a life again and friends and maybe even a lover. She can't talk, go to the bathroom or make a phone call. She doesn't know how to roll around in her wheelchair, so she's basically a brain trapped inside a body. This is how she was in the year 2000 and 2005. This is how she is today. Disabilities don't get better, so please stop asking.
Least you think I'm off the deep end, I do recognize that in polite society asking how people they are is the polite thing to do. Yet when others do it to me, I feel that the asker lacks even the most basic understanding what caring for a person with this level of need entails and how their questions make me feel. (Like crying in case you care)
Labels: Caregiving

3 Comments:
WeeeeeeEEEEE llllLLLOOOOOOOoove yoOOOOOOOuuuu !!
Me too, I love you too. I love your courage and your determination to write about how you see the world. I love your posts here on your personal struggles and triumphs, and your inspirational posts to agr. I can't wait to read the novel.
Jain
I love you Karin. I ask how you are because I love you and its ok if you say what you feel.
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