Monday, 12 September 2011

My AVM Story: Bad Days in Rehab

Some of you may remember reading this entry before. Because of some glitches in my blog, it was deleted. However, I thought that it was an important one, for a variety of reasons, so I'm reprinting it.

All names in this entry have been changed.

Some days in rehab were good.  Some weren't so good.

Rehab Fun

As I said in my previous post, we found ways at Ottawa Rehabilitation Centre to make the days fun. When the work day of physiotherapy, occupational therapy, life skills training, and appointments with social work, neurological testing, and vocational planning were over for the day, we had some time for ourselves. Sometimes I used it in constructive pursuits like practicing my hand-writing or practicing trying to get my scooter turned around in the elevator without hitting a wall. I never missed visiting with the therapy dogs if they were in the centre; I loved their visits.

One weekend when, for some reason, I ended up staying on the ward and a lot of other people happened to be around, we all watched "Galaxy Quest" one afternoon. It's an amusing movie, but not die-laughing funny. Alison, however, got the giggles, and she and I laughed until we could barely breathe. We should have been asked to leave, except that everyone else found us so funny that no one really cared about the movie.

One of the patient's families sponsored a ward Christmas party for all of us. That was the night that we found out

[caption id="attachment_982" align="alignright" width="300"] Fun with bubble wrap...[/caption]

that Helene could tow three people in manual wheelchairs behind her large electric wheelchair. We also discovered that running over bubble wrap in a wheelchair was just as satisfying as popping it with your hands.

Not-So-Fun Days

So there were fun days at rehab. But there were decidedly not-fun days too. One night, we all went down to Arts and Crafts again, to paint plaster Father Christmas tree ornaments. The volunteer instructed us that Father Christmas' robe and hat were to be red or green, the cuffs on the robe, the pom pom and trim on the hat, and Father Christmas' beard were to be white, and his face was to be flesh-tone.

"Screw that," I said to Nick and Angela. "I can barely write my name legibly. I'm not fooling around with  colour changes on itty-bitty areas. My Father Christmas is going to be all green, and he's going to like it."

Nick and Angela saw nothing wrong with this. The volunteer disagreed with them.

"That area is supposed to be white, dear." she said when she came to check on our table. "Would you like a brush to use with the white?"

"No, thank you," I said. "My Father Christmas is going to be all green."

"But that's not the way it's supposed to be, dear. See mine, up at the front?"

Nick and Angela were looking at me. "I see it," I said. "But I can't paint those little bitty areas. Everything is going to end up green anyway. I might as well just paint him green."

"I could help you to paint him the right colours. Would you like that?"

I was getting annoyed. "No, I wouldn't like that. I want to paint him green. But that's obviously a problem, so *you* paint him whatever colour you want. I don't care anymore." I tossed my figure on the table and pushed my chair back. "Catch you later," I said to Angela and Nick as I wheeled away. Nick painted the rest of my Father Christmas green and brought it to me later, but I didn't go back to Arts and Crafts.

Another bad day that springs to mind is the day that I got so frustrated with the brain avm and the stroke and the way that everything had turned out that I threw my cane at the wall. I'd been practicing my walking, and nothing about it in particular was even going wrong. I'd just - had enough.

And, of course, there was the day that I left. I heard that a particular nurse was going to be representing the nursing staff at my discharge conference and for the first time since I was a toddler, I threw a screaming, crying tantrum. She had misrepresented me to a group of doctors during a case conference when I was there, and that amounted to throwing me under the bus, as far as I was concerned. I was not giving her the chance to do it again.

I've had twelve years since the brain AVM surgery and rehabilitation to reflect on whether my perception of her actions was correct. I'm convinced that if I could go back, I'd do the same thing - less emotionally, with more of an appeal to staffing pressures that the centre was under. But I'd stand by my conviction that the only way that woman was coming near my discharge meeting was if she read my other day nurse's notes and was not allowed to comment on what she thought.

Sometimes stroke changes peoples' personalities. The old, timid me would not have stood so firmly on this, to the point where when the centre said, "Nursing won't be present at your discharge meeting, then," I said, "That's fine."

It was quite a move toward me growing a spine.  It's too bad it took a brain AVM and a stroke to get me there.

1 comment:

  1. [...] My last day at ORC was marked by my infamous tantrum about a day nurse that lied about me at a previous meeting being scheduled to represent Nursing staff at my discharge conference. Administration eventually declined to send someone from Nursing if I refused to have her there. This was fine, as far as I was concerned. My psychologist read Nursing’s notes, and the nurse who’d thrown me under the bus (as far as I was concerned) didn’t get to speak. It was a win-win for me, really. The whole sordid story behind that is here: [...]