Friday, 9 December 2011

My Brain AVM Story - "Get Up"

This is another essay from my book, "Run, Run Because You Can".  You can read the first essay from the book that I posted in this blog at:

Get Up

On my first day on Penetanguishene General Hospital’s rehabilitation floor, I woke up thinking, “I can’t do this.  I don’t want to do this.”

Decide whether or not to get up after we’ve been knocked down is like standing at the foot of a mountain and deciding whether or not we’ve got the stuff in us to climb it.  Mountains are huge and craggy. They often rise through inclement weather.  Often, what’s at the top isn’t even visible from the ground.  Your safety isn’t guaranteed when you climb a mountain.

So why do it?

Because we must.  Because the human spirit hates to be grounded when it can climb.  Because we’re meant to go without fear and strike a trail that we can be proud of, right to the top of our mountains.

An elderly gentleman on my floor at Toronto Western was famous among staff and patients for repeatedly trying to escape from the hospital.  He could not understand that he was too frail after his surgery to be even walking on his own, let alone living in his own home.  He promised he would sit quietly in the wheelchair if they would let him get out of bed, but the nurses soon learned that he would hop up and make a beeline for the elevator as soon as he thought no one was watching.

He almost made it off the floor one night. One of my visitors mentioned to one of my nurses that he’d just seen an elderly man in a hospital gown heading for the elevator…did she want to know about that?

She dropped everything and ran from the room.

Never Give Up

I never met this fellow.  I never even saw him. I did, however, hearing from my family about his escapades, and the stories delighted me.  I do love people who go after what they want, and this man seemed to concoct a new escape plan every day.  He became so hard to keep seated the wheelchair that the nurses were forced to belt him in it, for his own safety.  He'd sit by the nurse’s station, as he claimed it was too lonely in his his private room, for which he paid.  He would plead with my sister each time she walked past his wheelchair, “YOU will let me out, let me out!”.  Dad once caught him trying to saw through the belt restraint with a plastic butter knife.

Faith, Hope, or a Bit of Both

Deciding to get up and try again needs that passion and conviction.  It’s a decision made in the soul.  When it’s made, heaven itself shifts, though we don’t always see the action that we want here on the ground.   “Whew, that was easy!” you might say when it’s done.  “This is what I have decided.”  That’s how these decisions are.

When there’s no choice but to hope that getting up is going to be worth it, everything becomes very clear and very easy.  It’s making that decision again, everyday, over and over, until you breathe it, that’s difficult.  Because you won’t make it once, twice, ten’ll have to do it as many times as necessary, believing that it is going to pay off.  You can call that faith, or hope…personally, I think it’s a bit of both.

Whatever you call it, as long as you hang onto it, in whatever way that you can, you’ll be okay.  I believe that.

To Brighter Tomorrows

That first day, after I asked myself if what I did want was to be flat on the back for the rest of my life, powerless to look after even my most basic needs, totally forfeiting control of my body and my life, I decided I had no choice to but to get up.  And, as hard as it’s been sometimes to trust that whatever is at the top of my mountain is worth the climb, I’ll never regret taking that first step.

I am glad that I can still have faith enough to keep trying, and that I can dare to hope for brighter tomorrows.


  1. Dare to hope and dare to dream --- overused and damaged by popular (marketing) culture but still so fundamentally critical!

    In the last month I have gone from "Why bother" to the brightest future I have imagined for a decade.

    I'm glad you got up, I'm glad you fight your battles, I'm glad you are passionate and dedicated to the causes that you champion!

    Thanks Sarah!

  2. Trying 10 times and failing might mean setback right?

    I can't stop thinking about the complicit attitude and acts of visitors, nurses, and others in keeping this man who wanted to not be in a wheelchair to force him to be there.....for his own good (determined by others).

    You wrote that your safety when climbing a mountain is not assured. So why did you get to climb and he got locked down against his will? Without further information I don't know but it doesn't amuse me or delight me, it makes me alternate between nausea and anger, as it seems a recorded discrimination based on age, not on will.

  3. You make an excellent point, Elizabeth, and perhaps this is why I've grown uneasy with this essay since I wrote it in 2006 - particularly the part about the belt restraint.

    I don't know anything about the gentleman's condition apart from what I've written. I've always assumed that there was a good reason why he was not permitted to try to get around without the wheelchair (perhaps, like me right after my stroke, not understanding his condition and the limitations it placed on him, and therefore the potential dangers to his health). But the belt restraint has always bothered me.

    One of the things that I've always found difficult in my line of work is reconciling letting people who don't necessarily understand the consequences of a decision go ahead and make it when it has negative consequences for them...and feeling that there should be a way for other people to step in and protect people who can't protect themselves from their own lack of comprehension, in situations like this. Intellectually, I know that I stand on the side of ensuring that people retain as much personal decision-making power for as long as possible, even if it means that they make a decision with negative consequences...but my heart sometimes has a harder time with these issues.

    Restraints should be used with as part of a well-defined treatment plan and always as a last resort, though. I'm sure of that.

    Thank you, Elizabeth. You always make me think.

  4. Thank you for your thought out response. I was uneasy with that aspect because of the work you do, and it seemed, in 2006, that his determination to go outside was not thwarted by his condition but by specific individuals, which I found sad, that these barriers were placed on what? Was he a bomb maker? Or was it easier to force him back to the wheelchair than accompany him? I have accompanied those with dementia and taken the request as seriously as they make it. It isn't a joke to them, or to me when I am in that state.

    The one thing that remains is the feelings of a negative outcome. It does not stop people from trying but even without memory, in dementia, I know who to and not to trust. Instead of natural risks of wandering, it seemed he had found his enemy, and it was the people around him, not traffic, or cars, or lights or confusion, but that he was help a prisoner without chance of freedom or even a charge against him. I imagine it was done because it was easy, easy for the nurses, less work for them. I don't know that individual freedom should be taken away because a 23 or 31 year old RN is feeling tired this shift, or has had a bad day in traffic.

    I probably will always advocate for accepting decisions from others as equal to one's own, regardless of judged or deemed intellect, because not only is that so consistantly abused now, but we have such a horrific record of abuse (As you refer to above). I am glad that someone is there to assist people when the consequence of the decision is negative but who defends the right of people to make that decision - like you do.

    The worse phrase I have heard in defence of controlling those deemed intellectually sub-individual (in that we do not give them equal rights as ourselves, nor are they taught to expect equal rights) is 'they're happy' - Isn't that what books like One Flew Over the Cuckoo's Nest are all about? That personal growth, personal choices, learning, trying, risking involves learning to make decisions and follow them through that might be scary, or hard, or need help in achieving, but have moment of elation and change a person forever. That is why doing things 'by the rules' when no one asks, 'Why IS it a rule?' is so horrid. I would rather have a full life, one with risk, loss, disappointment but elation, joy, and the knowledge of self determination than to 'be happy', wouldn't you?

  5. I would.

    I blogged on this conversation, Elizabeth.

    You might also be interested to read 'Finger Spelling II", if you haven't's my account of being restrained at that hospital.