In a recent post I wrote about having to learn to accept people doing things for me after my accident. This was (and oftentimes still is) a frustrating thing. I obviously have my ways that I like things done, and when someone doesn't do things the "Heather" way or I can't find the right words to explain how I want things done it can be maddening! (Okay, that's a little dramatic, but still, it's really frustrating!)
Here's one of many things that I'll have to have people do for me for the rest of my life: being fed. Of all of the things that people had to start doing for me after my accident, being fed has been one of the worst, most humiliating things, if not THE worst! I quickly resigned myself to the fact that if I wanted to eat I would have to be fed by others. This resignation didn't comfort me or make things any easier. Being fed felt so degrading at first, like I was no more than an infant. Let me tell you, feeding someone is NOT as easy as you'd think, and unless you've had to be fed by someone else, you really don't know what it's like!
Feeding someone/being fed is definitely not just shoveling food into someone's mouth like you do for a baby. By the time you're an adult you're most likely set in your ways when it comes to your preferences on HOW you like to eat. (I think just about everyone has "their way" when it comes to how they like to eat.) I might feed you the way I eat and think I'm doing a great job, but if I'm not feeding you the way you're accustomed to feeding yourself, it can make for a frustrating experience!
It wasn't just the fact that I had to be fed, either. That was bad enough, but I also couldn't stand people watching me be fed. Talk about degrading! Here I was, 19 years old, and I had to be FED! After my accident going out to eat at restaurants was definitely off-limits and if I was at a public event where food was being served I just wouldn't eat. I've pretty much gotten over my loathing of having people watching me be fed, and although I don't like people watching me eat, I no longer let it keep me from doing what I want to do.
If you truly want to know how I feel, try having someone feed you. And no fair moving your body or gesturing with your hands to get the job done. The only tool you have to let people know how you want to be fed is your words! IF anyone tries this, send me an e-mail or leave a comment because I'd love to hear about your experience!
The reason I don't like other people watching people do things for me (like being fed) is because it makes me feel even more helpless than I already am. It's like, "Yep, I'm in a wheelchair and nope, I can't move or do anything for myself, either." It's just one of those mental hangups I have when it comes to being a disabled person in an able-bodied world. I draw enough attention to myself by simply being in a wheelchair, so I don't like having insult to injury by appearing even more helpless then I obviously am.
I'll add one more thing before I close this post. I've had several people ask me why I don't use a power wheelchair. This is a great question, especially after what I said in that last paragraph about not liking to appear helpless. I do have a power chair that I'm able to drive myself (it's called a sip and puff chair because that's how the control works), but I prefer to use my manual chair. There are a few different reasons why I prefer a manual chair over a power chair. First, I don't like how the sip and puff apparatus has to be in or near my face at all times. (Either in my mouth when I'm actually driving the chair, or very near my mouth so that I grab onto it when I need it.) Call it a shallow reason, but I just don't like having things in my face, especially if they're constantly messing up my lip gloss.
But the biggest reason is that I'm perfectly content having other people push my wheelchair. I prefer it! At times I've actually felt judged by therapists or other disabled people in my situation for not making the "most independent" choice possible, but this is what works for me, so I'm going to keep it this way!
Here's one of many things that I'll have to have people do for me for the rest of my life: being fed. Of all of the things that people had to start doing for me after my accident, being fed has been one of the worst, most humiliating things, if not THE worst! I quickly resigned myself to the fact that if I wanted to eat I would have to be fed by others. This resignation didn't comfort me or make things any easier. Being fed felt so degrading at first, like I was no more than an infant. Let me tell you, feeding someone is NOT as easy as you'd think, and unless you've had to be fed by someone else, you really don't know what it's like!
It wasn't just the fact that I had to be fed, either. That was bad enough, but I also couldn't stand people watching me be fed. Talk about degrading! Here I was, 19 years old, and I had to be FED! After my accident going out to eat at restaurants was definitely off-limits and if I was at a public event where food was being served I just wouldn't eat. I've pretty much gotten over my loathing of having people watching me be fed, and although I don't like people watching me eat, I no longer let it keep me from doing what I want to do.
If you truly want to know how I feel, try having someone feed you. And no fair moving your body or gesturing with your hands to get the job done. The only tool you have to let people know how you want to be fed is your words! IF anyone tries this, send me an e-mail or leave a comment because I'd love to hear about your experience!
The reason I don't like other people watching people do things for me (like being fed) is because it makes me feel even more helpless than I already am. It's like, "Yep, I'm in a wheelchair and nope, I can't move or do anything for myself, either." It's just one of those mental hangups I have when it comes to being a disabled person in an able-bodied world. I draw enough attention to myself by simply being in a wheelchair, so I don't like having insult to injury by appearing even more helpless then I obviously am.
I'll add one more thing before I close this post. I've had several people ask me why I don't use a power wheelchair. This is a great question, especially after what I said in that last paragraph about not liking to appear helpless. I do have a power chair that I'm able to drive myself (it's called a sip and puff chair because that's how the control works), but I prefer to use my manual chair. There are a few different reasons why I prefer a manual chair over a power chair. First, I don't like how the sip and puff apparatus has to be in or near my face at all times. (Either in my mouth when I'm actually driving the chair, or very near my mouth so that I grab onto it when I need it.) Call it a shallow reason, but I just don't like having things in my face, especially if they're constantly messing up my lip gloss.
But the biggest reason is that I'm perfectly content having other people push my wheelchair. I prefer it! At times I've actually felt judged by therapists or other disabled people in my situation for not making the "most independent" choice possible, but this is what works for me, so I'm going to keep it this way!
Great post! Lots of good insight into the life of Heather! So good to spend a whole day with you this week! Sure love you!:)
ReplyDeleteAwesome post - you have a way of making us all know what your experiences are and the impact they have on day-to-day life...and also giving us the setting on how we might feel given the same set of circumstances.
ReplyDeleteFor seven years I have worked at camps for kids and adults with disabilities, and part of our training for the last couple of years has been a "total-assist" meal. That's where we practice feeding other people, and then have other people practice feeding us. It is a very humbling experience. It is, as you have said, difficult to get other people to adjust to the way that you want to be fed. Only occasionally is there a great "connection" between people that really makes it easy and comfortable. I try to incorporate everything I've learned throughout the trainings whenever I work with someone who needs to be fed. There are so many different factors to consider - speed, bite size, preference of what to eat first or when to take a drink. I follow the camper's lead as much as possible, and I always think - is this how *I* would like to be fed?
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