If you had to tell someone "who" you are, how would you define yourself? What makes you who you are?
I might say horsewoman, even though my foot hasn't touched a stirrup in pushing twenty-five years. I might say hiker although I've done precious little hiking and it is more of a "wishing I had" descriptor. I could say environmental activist though I've never chained myself to a tree, ridden the Rainbow Warrior, or been arrested.
I started playing guitar at age seven. Over many, many years I have played many instruments with many different bands. I have been a part of some truly amazing music. I have a degree in music. I don't believe I have ever called myself a musician, though. I always felt I did not play well enough to deserve that designation. I am more of a musician wannabe.
I might say I'm intelligent, but not in the "Big Bang Theory" kind of smart. I'm no nuclear physicist or mathematician. I guess, to use Kelly's line, my knowledge is wide ranging.
Witty is a word I could use. I love to make people laugh. I'm willing to do it at my own expense or someone else's, so it is really only amusing if you are not the victim.
I've been called a Sasquatch because some of my characteristics are so seldom seen together that they seem imaginary.
Having pondered this for the last day, I've decided the best way to describe myself is chameleon. I want to fit into any group. I'll admit that at times I've been a really bad chameleon as sometimes even I can't change enough to make some situations work, but I've been successful more times than not.
It is more than that, though. Not only do I want to blend seamlessly into the situation, I want that for you, too. I want everyone to be happy, and if that isn't possible, at least comfortable. I have violated this when I singled someone out for verbal evisceration, but I can assure you everyone else was happy it wasn't them.
My desire to blend in and make everyone happy has been seriously compromised by the alterations to my body. I used my voice as a force to bring people together, to smooth over misunderstandings, to show people what they had in common. It was my go to tool, but now it has a short in it.
Food brings people together. It could be standing around noshing at a cocktail party or sitting with people you have never met at a conference luncheon. You can always talk about the food. Except now I can't.
If tubefeeding makes someone squeamish or uncomfortable, that violates my underlying goal. And how can I not draw attention to myself?
If my new situation demands that everyone around me change to adapt, that makes me highly uncomfortable.
I told Kelly that it is like someone took away some of my chameleon colors. Everyone is lounging around in lavender and I am orange with green polka dots. It makes me want to hide. But I hate hiding.
Does tubefeeding, or the inverse, not mouth feeding, define me? Does my speaking voice define me?
In other news, I had a swallow of plum wine last night. The interesting thing is that there is no doubt that it went down as it burned all the way. I also put the equivalent of a swallow into the tube. This gave me an instant headache, so I don't think I'll be trying that again soon. I can swallow water fairly consistently on the first couple of tries, but after that everything gets tired.
We had to buy a new bed. Ours, which was guaranteed to last ten years, is now fourteen years old. We've been waking up feeling half crippled for awhile now. We had meant to take care of this over the summer, but then something came up. Oh, yeah, cancer. I highly recommend The Mattress Company over by Valley River Center. If you go, ask for Daisy. She was amazing.
Speaking of Daisy, she was able to understand a lot of what I was saying. No background noise and facing the person seems to be a key. She asked questions about how they found it and if I'd be having more radiation. I don't mind answering these questions. I'm becoming a walking PSA for oral cancer.
As you have probably discerned, this was a rough weekend for me. Asking people to change who they are to make my life easier is torture for me. Admitting that I need help is painful. Recognizing that no matter how bullheaded I am, some of this is out of my control is maddening. Yes, I understand I am still processing my grief. Hopefully I am on an upswing today. If only I can find something lavender to put on.
Tuesday, January 21, 2014
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3 comments:
Kiara,
I don't know that defining ourselves is easy, nor necessary. Life throws too many curves at us for us to limit ourselves with a definition. Chameleon is good, it shows a willingness to adapt and deal with all those curves!
And I don't think that you are asking any of us to change who we are. What we all have here is a chance to grow and improve ourselves. So many of us can go through life not ever really knowing anything about these challenges. And as much as I really, really wish that you, my dear friend, didn't have to go through this, I am trying to find the learning in this. It won't change who I am, any more than it truly changes who you are. But it will give us more insight into life. And we, your friends and family, will spend time with you no matter how you eat or speak. We want you with us, not hiding!
Kiara, part of who you are is a teacher. Use that. You have already taught us about strength. And I see that you used it with Daisy. People ask questions, and you provide the answer - knowledge is power. Don't shy away from it, use it! Be the PSA for oral cancer!
By the way, I would be happy to put on orange with green polka dots! In fact, I would even dye my hair to match!
Did I read you swallowed water...why wasn't that ALL CAPS at the top? That is news!
Hello, Love -
Define Kiara? Let's see. A wife, mother, daughter, sister, friend, teacher - body parts don't even enter into the equation.
A plus in the life of anone who knows - and loves her.
Hopefully you and I will both be swallowing a little of that plum
wine very soon. I'm still smiling after reading that you swallowed some of it.
You rock!!!!
Love to my K4.
Love & hugs
xoxoxoxo
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