Thursday, April 22, 2021

Pajama Paralysis

 There is a phenomenon known in medical circles as 'pajama paralysis'. It refers to patients getting to the hospital, being admitted, putting on pajamas, and getting into bed, and then assuming the role of complete neediness. They refuse to do things for themselves and require help in areas far beyond their diagnosis. I have never experienced this in all my hospitalizations, I've always wanted to get up and move because I equated movement with home and my life here.

But the last time I was hospitalized, it happened to me. It was kind of forced upon me because the first morning I woke there was the note 'patient must not get up' written on the whiteboard beside my bed. They didn't want me to move or do anything until I met the physiotherapist. No amount of begging could get them to reconsider. And then, I gave up. I'd fought too many battles and I didn't have the energy to fight one more.

That was a mistake.

For the week that I was in the hospital, I let my energy and drive just drain away. I didn't argue about the decisions that were made about me, I didn't cause a fuss at all. I hated being in bed all day except for the 20 minutes I had with the physiotherapist, but I succumbed to the hospital routine and the sign beside my bed told everyone to expect nothing from me in the way of physical movement.

Then, suddenly, I was on my way home. On arrival at home, I found that the loss of drive and the loss of expectations had taken deep root in my mind. I found it difficult to do anything, even stuff I enjoyed doing before now just seemed like a chore.

I had lost strength, yes, but I also lost the perspective that would have had me worried about that. To be honest, I'm still struggling with this. I know, really deeply know, about the tyranny of low expectations and what that has done to people with disabilities, I know the damage, I've seen it.

So the last few days I've worked on caring.

Caring that I love driving my own life.

Caring that I have high expectations for my life.

Caring that I am still aiming at goals.

And this is heavy lifting indeed.

1 comment:

Unknown said...

I so get what you mean. I have a couple of people in my life now who have very low expectations of me and on my days where I am fatigued, not tired, fatigued, I really have to fight to get them to let me do even the smallest task. Sometimes I don’t have that ounce of fight I need and give in to their “caring”. How very easy it would be to just let them do everything for me. I’m having a battle about working, being told I shouldn’t be doing it....... I’m sure you know me well enough to know what I say to that!
But you Dave, you keep your sort of caring going.