Thursday, September 10, 2020

Careful Now

 Be really careful about how you read this.

Be really careful about how you respond to me.

I'm even uncomfortable writing this because I fear how people will react. But I want to be transparent about my life and since I don't take pictures, this blog is my personal record of my life.



It was my first day of retirement and it got off to a bad start. We'd stayed up past midnight watching 'Away' on Netflix and just before going to bed our smoke detector went off. Oh. My. Does that make a noise! Joe got out a stepstool and gingerly got up on it with me shrieking "Good God Don't Fall'. He was unable to do anything. The thing beeped in a pattern, one, short pause, three, longer pause, one, then a fairly long pause. We went to bed after shutting the bedroom door to block out as much sound as possible. We both had shitty sleeps.

Once up, we got the thing fixed and then faced the day. It was my first day of retirement and I had something special planned. I've been seeing a nurse every week and she's been teaching Joe how to do a treatment for my legs that has made me more stable standing and less of a risk when using the walker around the house. Three weeks ago, I started some leg and butt exercises that were aimed at getting me up and moving a bit more with my legs, not my wheels.

I had set it up in my mind that today I would go for a walk in the mall. I would roll in with my chair, Joe would carry in the walker, and then we'd go to a place in one of the very large stores where there are usually very few people. Sitting at my desk after that horrible sleep, I almost gave up the idea. But I asked Joe if he could fix my legs and if he was up to going out. I hadn't told him my plan, that was to be a bit of a surprise. He didn't understand why I wanted my walker brought along but he was tired and asked no questions.

We got to the area and there were more people there than I expected and again I almost gave up. I don't like to be watched or stared at. But, I locked my chair and stood up. I took the walker and instructed Joe to follow quickly behind me hoping if I fell, I'd fall back into the chair. I looked up, set a goal, and headed towards it. My walk was slow but my gait was steady, I made it to my goal, turned around, and walked back. About halfway to the start point, I flagged. I had to stop several times to catch my breath and relight the pilot light on my determination. I made it.

Just before I sat down a group of three very young teens bolted over to that area playing some sort of catch and release game. They came to a stop when they saw me. I could see their eyes take in the whole scene. Me, a huge man, with a walker, and a wheelchair just behind me. They started laughing but slowly the laughter died, it was like they took a second to realize that this was a sacred moment for me and the wind left them, then they left me alone.

Why am I worried how you will read this and how you will respond to it.

Decades ago I worked in a school with kids who had physical, not intellectual, disabilities. One of them was a wheelchair user and after one summer he came back walking with the use of crutches. I walked with him to his first class and when he went in everyone applauded and cheered him.

That made me uncomfortable.

My walk today doesn't mean anything really.

It doesn't mean that for those few minutes when I was up and walking that my status had changed, I wasn't more worthy, I wasn't fundamentally changed.

But walking has become, to many, the deal-breaker. "I survived a terrible accident and I was left 'confined' to a wheelchair." "I can't imagine not being able to walk."

Walking is like the very limit of human imagination - there is nothing of value beyond it.

What I did today was a different type of exercise. In fact, I was slow and my steps were labourious - my movement in a wheelchair are quick and graceful in comparison.

So, please.

Don't cheer.


Deb said...

Walking is not an end, but a means to an end. Lots of us are able to ambulate, but doing so requires so much physical effort and/or mental concentration that it interferes with life. How can someone appreciate the sound of a bird singing or the feel of the breeze on their face or that wonderful crisp scent in the air that means summer is giving way to autumn if their entire focus has to be on staying upright and moving one foot in front of the other? Walking should be like any other exercise we perform. If it strengthens those glutes and in some way makes other activities easier or more comfortable, go for it. It's not the exercise itself that is important and applause-worthy, it is what we accomplish by doing that exercise.

Lauralee said...

it's bizarre, isn't it? A very, very long time ago, I worked with a guy who was under so much pressure from so many people to if that were everything.

And yeah, he could do it. But it took everything he had: his focus, energy, and his hands. In his chair he was able to be a counselor like the rest of us; better than some. But as soon as he put on his legs and stood up, it was all about him; it had to be.

So much to offer, and yet you'd think he'd failed miserably because he "wouldn't try"

Kake said...

The thing I like about this is that you didn’t let a bad night’s sleep get in the way of doing the thing you wanted to do. Doesn’t matter what the thing was; just matters that you wanted to do it. Congratulations on your retirement!

Myrthe said...

I hope you had fun walking.

I try to look at rehabilitation (I'm not sure if that is the right word to use, but I can't think of a better one) the way I look at sports and hobby's. If you like your morning run, then going on a morning run is a good activity. If you like doing sudokus, then doing sudokus is a good activity. But doing sudokus isn't "better" or "worse" than running a marathon.
Similarly, if you like walking, then walking is a good activity. If you'd rather work on your wheeling muscles or on your cross-stitch, then those are good activities.

It's just about doing what increases your own joy and happiness, what you find adds to your quality of life. It's a lot more not about "choosing to (attempt to learn to) walk" or "choosing not to (attempt to learn to) walk". The choice to walk is: a choice to invest time and energy in learning to walk and not have that time and energy for somethig else; a choice to walk somewhere and be so tired afterwards you can't pay attention to a conversation with loved ones; etc.

Walking and learning to walk are valid ways to spend time.
Wheeling, cross-stitch and sudoku are equally valid ways to spend time.

I hope you enjoy your retirement, and use your free time in a way that brings you joy.

Colleen Orrick said...

Am I allowed to cheer that you set your goal and achieved it? In spite of many obstacles? It doesn’t matter what the goal was - you set it and you met it. I’m pretty sure I would have wimped out. But you didn’t.

Christina P ONeill said...

Dave. this is more of our experience than you know. 'My' Dave is wheelchair dependent and needs help walking and transferring, this after a stroke more than eight years ago. Your challenges with walking are familiar to us, and what you describe about being in public is painfully close to our situation. Back in the summer I took Dave to Elm Park (in Worcester) for an outdoor walk in sun and fresh air. We ran into the former owner of a company I used to work for. He recognized me but not Dave in the wheelchair. When he asked who it was, I told him it was my husband. My former boss is a pretty poker-faced guy but I saw the split second look of shock on his face. This is why I don't like going out in public. I don't want us to be a spectacle. I am: Christina P. O'Neill

CapriUni said...

Not cheering your walking (I agree with you that, of all the the markers we use as a sign of humanity, walking is grossly overrated in a way that is gross). But I will:

A. Congratulate you on setting a goal and meeting it, even after a bad night's sleep,
B. Wish you a happy and fulfilling retirement,
C. Say it's good to read a blog post from you, again (I've been wondering how you've been doing), and
D. Express pride in those young people, who recognized your humanity and honored it.

ABEhrhardt said...

You're pretty good at doing what's best for you and Joe - keep it up.

The world will adjust.

Rachel Gregoire said...

You’re an incredible human and thank you for sharing your vulnerability with the world ✊

Liz Miller said...

My stepdad is recovering from GB, and recovery is slow. He and my mom are currently in an accessible apartment, where they would be fine to live the rest of his life. His goal is moving back to the brownstone they own, which has steps and narrow halls. It looks from the outside like his goal is to walk, but it isn’t really.

painting with fire said...

I am so glad you are writing again - I missed your words!