Thoughts on Being "Disconnected" -- Amanda's Voice

I've met some of the most incredible people since my injury, people I would never have met otherwise. My life is so much richer for knowing them. Amanda is one of those people.

I think I would have liked her no matter what. Amanda is an intrepid spirit. She's very smart, well-read and well-traveled. She's introduced me to Russian art and a new author. She teaches me so much and she's half my age!

Amanda was injured on Christmas day two years ago. She was snowboarding and struck a piece of grooming equipment that wasn't supposed to be there. I can only imagine what that day must have been like for her and her family.

Amanda sustained the most devastating spinal cord injury possible. She is now a C-2 quadriplegic. She requires a respirator to breathe. She depends on other adaptive technology to manage her life; voice activated software allows her to use her computer (she's diagnosed and fixed my computer during a chat session), maneuver her wheelchair and operate the lights and doors in her home. She's headed back to school to finish her post-grad program. She's one of the most grounded people I've ever met. I have no pity for Amanda; only profound admiration.

I am not the writer that Amanda is. I'm struggling to find the proper words to introduce her here just as I struggle to find words to describe this new life. I am, however, smart enough to know when I should get out of the way and let someone else talk. Following is a recent entry from Amanda's blog. It says everything. I begged her to allow me to share it. She was gracious enough to agree.

So, with permission, here's Amanda....

Thoughts on Being "Disconnected"

I had a conversation with somebody recently and they asked me what one word I would use to describe myself. It’s not very hard for me to think of an answer. That word is “disconnected.”There is the obvious physical disconnect. My day seems to be a never ending routine of somebody touching or otherwise manipulating my body for 100 different reasons. Feeding me, turning me, stretching me, bathing me, keeping my lungs clear and on and on. It never ends. Once one thing is done there is little reprieve until the next. Everything is scheduled and charted. Micromanaged. In reality my life has become a series of checklists and medication sign off sheets. Nothing can be forgotten. There is very little room for compromise or rescheduling.

Some of it happens when I am sleeping. For the most part though, I am awake. And when I am awake all this takes on a surreal feeling. I know this stuff is being done to my body because I lay there or sit there and watch it. But for the most part I feel very little of it. And for what I can feel, the sensation is either so impaired that unless I am watching myself being touched I can’t be sure what is going on. Or there is pain. Pain that doesn’t always make sense and can drive me to want to die on the spot. But that’s an entirely different topic.However, I am for the most part detached from it all. Disconnected. It might as well be somebody else lying on the bed and I am watching them having things that look both undignified and uncomfortable done to them. Dignity went out the door long ago. I don’t even know anymore what that word means when it pertains to me and my self-image.

This is a good day. On a bad day my body spasms like mad or otherwise seizes up. It shakes, thrashes, clenches, freezes. Again I watch it with detachment. It’s my body trashing around but it doesn’t feel like it. Mind and body are disconnected.

Then there is the emotional disconnect, which is I believe harder to deal with. I try to make myself feel better by repeatedly reminding myself “things could be worse.” And it’s true, they could be much worse. Some people don’t get this when I tell them that. For them my life is about as terrible one as they can imagine. It sucks there is no doubt about that. But I have no pretense that my life is as bad as it gets. The truth is though, regardless of my understanding of this, it doesn’t really make things any easier to deal with. The reality is that having to depend on somebody else for essentially everything is humiliating, exhausting, and although this might make not make a lot of sense, isolating. I have people around me 24/7. If not right in the same room then within earshot. Which means no closed doors and somebody popping their head in the room every few minutes to make sure the ventilator circuit hasn't popped off and that I am still breathing. But even with that, I feel alone, cut off, and not part of everything else going on.

I can do things. More things that most people might imagine. But they all involve somebody else doing something to enable me to do whatever it is I can do. Setting up my laptop so I can use it, putting me in my wheelchair so I can move around, even something as apparently easy as using a voice activated system to turn on lights requires somebody attaching my speaking valve to my tracheostomy tube when I wake up in the morning so I actually have a voice. The effect of this is that while I cherish what little independence I can have, it is always bittersweet because that even that independence is dependent upon others. It wears me down to continually ask for things. Many of those who function in a caregiver role have become very good at anticipating my needs. This makes things somewhat easier. But often I just skip over doing something because I am too tired to ask. This makes me feel disconnected from myself and from life. That might not make sense but that is how it feels. It is an incredible mind fuck to see a glass of water on a table a few inches from you and not be able to do a damn thing to drink it unless you ask somebody to come and help. But that glass of water is pretty much a metaphor for a thousand other things. All around me, out of reach, disconnected.

More later.
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