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Jokes, Jesus and being afraid.

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Elizabeth McClung | 06:00 UK time, Friday, 28 September 2007

This week, I was lying in an operating theatre. My arms were tied down with an anesthetic mask strapped to my face when I started doing ASL finger-spelling sign language.

“Look, she’s signing.” one of the nurses said.

“It’s so pretty.” another commented before asking, “Does anyone know sign?” No one did.

“Still, it’s a very beautiful language.” They all agreed.

What I was signing was: “I’M AWAKE!!!!! PLEASE DON’T START!” (I am terrified of being operating on while awake.)

That incident is exactly the difference I am getting between my viewpoint (I am tied down, terrified, unable to speak due to the mask and I can’t see where the scalpels are) and others’ viewpoint (Isn’t that pretty).

Over the last few weeks many, many people have told me that “I have a great attitude.” I have been told by people with long term disabilities and those who work with people with disabilities that “I’m dealing so well” or “You’re so positive, it’s inspiring.” The Red Cross workers told me, “I’ve never met someone coping so well, you’re amazing!” Now, these people may think that but I (and I hope you) know better; I’m tired, scared, self absorbed and cranky. But I make a lot of jokes. I make people laugh instead of feeling sorry for me. I do it because a) I am a sick twisted person and b) because I am afraid.

A few days ago one of my home care assistants became convinced I was going to die in the near future. She turned to me with concern on her face, “The most important thing now,” she said leaning in and putting her hand on my shoulder, “is to let Jesus into your heart.”

Personally I find nothing more terrifying than a young evangelical standing over you in your own home refusing to take a hint and leave. She told me, “The relationship with Jesus is both eternal and unchanging.”

“Really?” I said, “Because Jesus and I have been dating and I sort of wanted to take it to the next level but if you say he’s ‘unchanging’....”

Nothing slowed her down. Not only did she pull out her own bible but started searching through my books to see if I had one. So why did I make jokes instead of telling her to leave? Why did I not call up her supervisor when she stayed on an extra hour to convince me of the immediate need of accepting the burning love of Jesus Christ (“When you put it that way, actually I'm already in a lot of pain…”)? I did it because I was afraid. Afraid that home care would send her back (they did, the next day) and she would be angry and deny me care; afraid that I would anger the home care agency and they would not send people when they promised. Just afraid.

I am not used to being physically dependant. Being in a situation where if someone is upset at me, I can’t change clothes or eat is unnerving. Someone asked me this week, “You seem pretty extreme (toward your body), if you weren’t disabled, do you think you would be more active or less?”

I gave them the ‘look’ and said, “I used to train for marathons on the basis that if I didn’t pass out at the finish line from internal bleeding, I wasn’t really trying.”

“Ah!” they took a step back.

I’ve never been a gifted athlete, but I’ve always been “in control” of my body (if by “in control” one means dishing out abuse levels of exercise on a regular basis). Before and now is summed up by this; I slept on the floor for 10 years, now I sleep in a hospital bed. And physically depending on people, on “agencies”, on medicine, on assistive devices is scaring me. Okay, I’ll admit it; “Does not play well with others” might have shown up a few times on school report cards. “Does not respect authority figures” showed up too (along with a few parent-teacher meetings).

At 7:00 am Monday morning, I’m asking the nurses and the surgical team, “Did anyone here party a lot last night? Any hangovers?” Seriously. The surgeon came to reassure me and the first thing I said? “Are you a morning person? Would you consider this early? Do you find it hard to focus in the morning?” Everyone laughed. They thought I was making jokes.

Okay; being dependant scares me, which means I don’t stand up for my rights as a client and a human being. Instead I make jokes. Isn’t the first step admitting you have a problem? So what’s the second step?

Wheelie Catholic in her Sept 25th post on dealing with service calls explains the Tao of Betty: Just say no. The idea is that it isn’t my responsibility to a) make sure everyone feels comfortable; b) satisfy everyone’s curiosity about my condition and c) explain my every limitation when asking a caregiver/agency for assistance. It isn’t? Reasserting my right to say “no” sounds hard, sounds difficult, sounds potentially embarrassing. If that’s true then isn’t that particular mix the kind of thing I used to be interested in (naked rock climbing? Count me in!)?

Being dependant (and the fear) is something I deal with every day. What I don’t know is how to balance being self assertive in that framework. I don’t want to be the cranky miserable bi..er..witch who everyone hates because she is always on the phone complaining if every single thing doesn’t always go her way. But I am getting a bit tired of being nice and jokey to people who don’t respect me as an equal human being. I need help.

So what have you done to create that balance? How do you deal with being dependant? Because I’m looking for tips, experiences, and helpful advice; if you want to recommend The Secret please go to the back of the queue.

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Comments

Gawd, I empathize with not speaking up because you're afraid of losing care. That sums up my childhood, and a lot of my adulthood.

  • 2.
  • At 11:01 AM on 28 Sep 2007, Chris Page wrote:

I had one agency woman who would only deal with what SHE was comfortable with - yet she would happily talk down to me like a child or air her right-wing opinions in my home, so I phoned up the agency and complained. She was reassigned.

Reading this (excellent) blog entry, I don't really see it as being about a disabilty at all, but a particular person's very understandable attitude toward life. I think those fears (and irritations) are not at all uncommon and we all like to feel people are taking the time to understand us, however it is necessary for them to do so.

  • 4.
  • At 09:47 PM on 28 Sep 2007, Dave Hingsburger wrote:

Being a disability advocate before becoming disabled made the transition a lot easier for me. I already knew that agencies fear a calm, firm, angry client. They fear our voices, they fear our ability to go public, and they fear being caught out. I learned long ago to keep my temper under control, to never, ever swear, to be angry and show it but without the loss of logic. I'm right now in a fight with a hotel chain and it's getting nasty, they thought I'd just quietly roll away. Wrong.

Ask yourself this question, "What would Zed do?"

Dave,

I'd be curious to learn more about your fight with the hotel chain. Will you blog about it at some point, either at BBC ouch or at davehingsburger.blogspot.com?

(Speaking of hotels that discriminate: anyone going to Trinidad, Colorado should stay far, far away from Trail's End Motel, for details or alternate recommendations, contact me at ashettle at patriot dot net)

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