Tuesday, August 14, 2012

Amy's Weekend

On Tuesday (maybe Wednesday?), Amy's wheel popped off her chair.  It won't be fixed till this today.  And so, Amy has spent the better part of the last week in her second-rate manual wheelchair.  It's not a bad chair in theory, but the seating system was not designed for her and doesn't support her.  Mom bought it at a used wheelchair charity shop for $150.

I feel incredibly guilty that she is not in her fancy folding chair that we bought, but that chair presents a handful of issues, including that she can't ride in the car in it, and that it is semi-fragile and her house is known for breaking things.  We need to swap manual wheelchairs for a week or two so we can work on the seating, but the last few times we've seen her we haven't had room in our car for her big manual wheelchair, and since her power chair was broken and she was using her manual chair full-time (and not as backup), we couldn't swap because of the transportation issue.  Aaaanyway.

Amy says she feels like her legs have been cut off.  She says she feels like "a material, not a person."  She sits alone in her room, unable to move.  She asked if she could come out and her staff told her they were busy making dinner.  She asked if she could watch TV in the living room with everyone and they told her she had a TV in her bedroom.

Also, again on Sunday, Amy was left to lay in bed.  Not till noon, but all the same, she lay there waiting, not knowing when she's be taken care of and allowed to get up.

Just in case it isn't clear -- that is all completely unacceptable.

I hate that place.


On the upside, Amy is climbing a mountain emotionally.  I could not be more thankful or proud.

The house visit was hard, and Amy freaked out.  She freaks out sometimes.  We all do it, but what is pent up in Amy, and her inability to do affect to change her circumstances or give her some relief gives her freakouts real fire.  Since she needs help to do just about anything, if she freaks out and her caregivers can't understand her, they can't help her.  And in her current house, even once they figure out what she wants or needs, there is only a limited spectrum of what they'll do for her.  She can't say can we just take a walk, or can we just sit and talk for a minute, I need to talk.  They won't do those things.  A lot of the time, she can't even ask for a cup of tea without someone telling her no for some bullshit made-up reason born of laziness.

Amy has plenty to freak out about.  She's trapped inside a body that doesn't match her mind, and is surrounded by caregivers who treat her like her like it does.  She tired of being disabled, she's tired of not having a real life, she's tired of being tired of all this.  She pissed that she will always be disabled.  She's also grieving her mother, with whom she had as deep a relationship with as anyone can have.  Even I can't prentend to know what it is like for her, having lost not just the mom we shared, but also the person who acted as her arms and legs, her champion, and her primary companion.

So, this mountain.  We've been talking A LOT about feelings, responses, and wants.  We've talked about times when things did not go well because of emotional responses.  We've talked about really great times that would have gone completely differently if a mega-freakout had been in the mix.

We've agreed that I will not talk to her on the phone when she is full-blown freaking out, and we've talked all about the deep, cutting heartache than Annie, Walker, and I experience when we experience her full blown freakout, and how it turns us in to emotional messes who then can't support her because we are freaking out, too.

Some people will right this off as part of your disability, I told her, but I KNOW that you can control yourself because when you can see how it will immediately benefit you, you do it!  I KNOW because I've heard you stop so that you can talk to me.  That means you can, most of the time, choose whether or not freak out.  That means when you are freaking out, you can decide to scale it back.  You have to start deciding how to respond to things.  It ALWAYS benefits you. Everyone freaks out sometimes, and that is OK, but we can't freak out every time, because it is exhausting, and it creates a barrier between you and other people.

We know that you are in a lot of pain.  You don't have to prove it to us.  We will listen, and we believe you, and we know you are in pain and frustrated to your core.

We've talked how sadness and crying are completely OK, and how everyone can relate to that pain, but how taking it up three notches is only destructive.  I hope you like freaking out, I said.  I hope it personally gets you somewhere inside, because it gets you nowhere with anyone else.  No, I hate it, she said.  Then you should really go with gentle crying, or even heavy sobbing when needed, it will get you a lot further with other people than crazy freakout.

And that is what she has been doing, and it is AMAZING.

A recent voicemail: Hello, Allison, please call me when you get this.  I am in a lot or pain, emotional pain, and I really need to talk to you.

By the time we talked, there were tears.  A heavy, in your chest crying of deep sadness.  We talked and talked and talked, about Mom, sadness and frustration, and I told her ridiculous tales of this weekend's work.  No freakout.

We've been doing this a lot lately.

I'm trying to climb this mountain along side her -- to freak out less when she freaks out, to remember that just because I don't get worked up with her doesn't mean I don't love her, and to help her by endlessly rewarding the good responses.  That means making sure I'm not over-responding when she's frantic, and under-responding when she's not.  It's easy when she in a good mood and I'm up to my ears in sawdust and plaster to tell her I'm busy and we'll talk later, but those are the good times to set down what I'm doing and to talk, and be part of her good day.  The most important thing to me is to make sure Amy knows I love her and am proud of her, and never feels like I'm witholding love or pride, and that I am here for her, even when I cannot or willnot talk to her at that moment.

I am amazed by the power she has inside of her, and excited to help her harness it.  We are both tired of no one expecting anything from her.


I debate whether to post things like this.  I never want to disrespect Amy or make her seem like less than the full person that she is.  I read my posts to Amy, and her and I have agreed on these new tactics together.  Amy deserves applause and pride, no different than if she scaling an actual mountain.


Monica said...

I am so proud of both of you! I can't imagine what it's like to lose your mother and I'm sure everyone handles it differently. I don't think anything you write about Amy is disrespectful. In fact, I find myself admiring Amy even more for what she is put through by the people in her house and by all life has thrown at her. It takes a lot to rein it in and people in much less frustrating situations than Amy's have trouble doing what you asked her to do. You are amazing people and I wish I had the relationship with my sister that you have with yours.

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