Sunday, 23 July 2017

It's a pity you are handicapped.

It's not hard to recognize certain facial expressions. One of those is pity. I was at the market in Goderich yesterday morning (somehow managed to get there between bouts of pouring down rain) and was just heading back to my car - lap full of goods - when it started to rain again. When I left the house on my own this morning I knew full well that I might get wet - but so what? It's just water, and aside from a wasted bit of blow drying, what was the big deal? I wouldn't get cold and eventually I would get dry. I had arranged my produce (peaches, blueberries, strawberries, beets and cantaloupe) overtop of the three loaves of bread (yes, a full load) so they would not get wet and had one more stop to make that was right where I had parked. I was counting on the last vendor to just put my two cauliflowers and tomatoes right into the car - it's nice to know the farmers.

As I was making my way to the car, I caught a look. I did not know her, but being that this was Goderich, it was possible that she knew me. However, we had never met before. Although it was just a glance, I am sure that it was pity. And I am not interested in it. Say hello, give a wave and a smile, make a comment "here it comes again" or "haven't we had enough?" I was not complaining about the rain, in fact I boldly had left my raincoat in the car! It is not possible to wheel and hold an umbrella, but I left the house knowing full well that I would likely get wet. I made that choice, to challenge to myself - get to market, shop, load the car (ingenious use of my slider board here) and get on to the next thing - all on my own. And so I did, just a bit damp, no pity required.

So what then, was the word? Handicapped. Used by a man whose own father had a disability. Please, let us just let this word go. It is offensive when used as an adjective. People with disabilities who fought to control their own destiny also fought to use the word disability - rendering the word handicapped obsolete. So let's stop using it. You have to decide to make that change, just like you choose to stop swearing in front of your kids when then started saying things back to you that you didn't like to hear. The apple never falls far from the tree - ask any teacher this after parent-teacher interviews. Kids learn ignorance at home.

Language changes, there are many examples I could give, but just remember people first. I am a person who uses a wheelchair. I am not "in a chair", I use a chair. In implies that I never get out. I do; often. I sleep in a bed, drive my car, stand and swim. All without my chair. I am not disabled, I have a disability. I use a wheelchair parking pass and accessible bathrooms.

I ride a hand bike.

And I paddle a kayak.

Go ahead and apply a handicap to your golf game or your next horse race. But don't apply it to me. And save your pity, no one needs it anyway.

Saturday, 8 July 2017

Sesquicentennial Celebrations

Not only are we celebrating 150 years since confederation, we are also in the 100th year since women "gained" the vote in Canada. Lisa Thompson, Huron-Bruce MPP, invited 150 women from the region to celebrate these two events at the Assembly of Remarkable Women in Huron County.
Lisa Thompson, Huron-Bruce MPP;
co-host of the dinner
Karri-Anne Cameron - Community Activist,
Chair of the Building Bridges Campaign

Debbie Green - Educator,
Principal F.E. Madill

Marion Studhalter - Role Model;
Current Queen of the Furrow - note the crown!
150 women were recognized as Mentors, Community Activists, Educators, Politicians, Authors & Publishers. I had dinner with many of my friends from education, sat across the table from the first female chair of the IMP and met a woman who herself was turning 100. It was wonderful to see so many of the "movers and shakers" from Huron in attendance, but by no means were they all there. How could you possibly find all the women in this area who have done so much for their community? Many "fly under the radar" doing good for those who don't even realize it. 

I was recognized as a community activist, but really, I am just getting started. I see making more change in my future.

Sunday, 2 July 2017

A different perspective

23 months ago a man, driving a car, caused a collision. It was just after 9am, he was returning home from dropping off a couple of videos in town and had stopped to get coffee and a sandwich. As he drove along the straight stretch of road that he had driven a thousand times before he felt and heard, more than he saw, something hit his car. He thought, at first, that a deer had come out of the ditch and ran into the side of his car. As he looked into his rearview mirror, instead of a deer what he saw was the blur of colours, a person, flying into the ditch.

He pulled over as quickly as he could and went back to see if this person was okay. As he got to her he saw she had a helmet on, still attached to her head. He looked and saw a bike, white, about 20 feet ahead. She was conscious and trying to get up, she was asking for his help. He said, "Oh my God. I'm so sorry. I didn't see you". She kept trying to get up, pushing with her arms. Blood on her face. He did his best to sooth her and told her to just lay still. Another man arrived and said he had called 911. An ambulance was on it's way. Someone else stopped and offered first-aid. Thank God.

In what seemed like an eternity, an OPP officer arrived. The ambulance came and put the lady on a stretcher, loaded her into the back of the truck and drove away with lights and siren. Now, all the attention was on him. He felt like he was going to be sick. What had happened? What did he do? What did he remember? No, he did not have his phone. Yes, he was alone. They looked at his car. There was a white streak and scratch on the front right panel and the passenger side mirror was smashed. There was a hot coffee in the cup-holder and a half-eaten sandwich on the passenger seat. No, he had not been drinking the coffee - it was too hot. Yes, he had been eating the sandwich.

He sat in the back of the cruiser while the officer spoke to him. What had just happened? How could this be? How could he have not seen this person, a woman, on a bike? He had not seen her.

After that it was all a blur. He doesn't remember how he got home, or what he told his wife and kids. Everything would be different now. He could not look people in the eye. Could not even look at himself in the mirror. He had caused irreparable harm; damage that could not be undone. He would remember this for the rest of his life. Every day he wished he had the courage to look her in the eyes and say he was sorry; longing to be forgiven.

He had not seen her.


You are forgiven.

Sunday, 25 June 2017

Addiction takes all forms

First physical activity I have done since Wednesday.
Also, first time with my new poles.
Today is day five of a change in medication. I was feeling at the top of my game, so I decided now was a good time to see about reducing the amount of drugs I am taking. Of course, right? Feeling great, so let's screw with things so the likely outcome is feeling crappy? Well, that is not the entire truth. You see, every day I get a bit of a foggy head in the morning between 10 and noon. It varies from day to day, but some days I just stare into space, sometimes ending up crawling back into bed. I have not been great at tracking the effects of my meds, but I think that this spacey head thing began when I started the antidepressant, and I think it got worse when I doubled it a few months back. So on the advice of my doctor, I have reduced it by half to see if those side effects will abate.

Having gone from 60mg to 30mg is not that big of a change, even though it is by half. It all depends on the dose, right? So I can only imagine what going cold turkey would feel like. I slept a full ten hours last night - felt okay this morning - so I think I am making progress, but it's not easy. By the end of the day my nerve pain is back to a 10 and I am weepy. Ella is away at camp right now, and last night I cried because I missed her. May times this week I have wondered why I am doing this, surely it is not worth it?

Knowing how physically and emotionally difficult this small of a change in medication has been for me I can only imagine what others have/are going through. The dose is the poison, right? So those on strong shit like opiates - I can only imagine. They must just make everything feel so much better, and then consequently are so incredibly difficult to control, let alone cut out.

Theo and I had a funny conversation last night. He overheard Oliver telling his friend "my Dad is addicted to World of Tanks" (which, for those of you that don't know, is a video game). This, of course, is one of those "out of the mouths' of babes" kind of thing kids say. They want to emphasize a point plus they don't really have filters. (I can only imagine what he says about me and Netflix.) Imagine this boy going home and repeating what Oliver said. Those parents may say something along the lines of Theo not having "grown up". Now, let's change the the conversation by replacing World of Tanks with a drug or alcoholic beverage of choice. What is the response? Something like, "Oh, yeah, they've had a hard time."

It has been a hard time. And there definitely have been moments (or more than moments) that I have thought "get of that *&^% computer" and I'm sure he has thought the same as me. But now I am going to try to think of it differently. It's the escape that helps to get through. And we, collectively, have to remember that we don't know what trauma/abuse/pain someone has/is dealing with. But they got there somehow. And is sure is hard to get back.

This is what double polling in a wheelchair looks like, with not a lot of practice and on a rough and sandy trail. Keep in mind that my videographer is 11.

On loathing thyself

This one was taken by a photographer hired by London Health Science Centre's Inside Magazine.
This is not the first time, nor will it be the last, that I talk about my body. Specific parts that do not look or behave as they used to. It's was yesterday's topic of discussion at my therapy session. My belly. I know in the past I wrote about it being warm and soft, but now it's just there, sticking out in a way that is not pleasing to my eye. Body image is something that everyone struggles with at some (or many) points in time. Too fat, too thin, no butt, too big a butt, no muscles, crooked nose, dark circles, fat ankles, ugly toes, thin hair, too many freckles...pick your poison.

But here's the thing that I learned yesterday. You're going to have to live with it. Changing your body is not really an option. Well, you could go super disciplined with diet and exercise for a certain amount of time - but that is not a sustainable lifestyle choice, in my opinion. We all will give in. So what do you have to do? Give yourself a hug and say I love you just the way you are? Do you trick yourself into loving your flaws? Pretty hard. Or do you recognize the truths. Age - you only get older - cells regenerate more slowly. Work - usually sedentary - consumes more time, meaning less time for exercise. Babies - they change our bodies forever.

Then, in my case, it's physics and biology. No neuromuscular activity means no abdominal wall to support the abdominal organs. So my gut is intestines just "hanging out" instead of being tucked in, in a lovely organized fashion. My posture sucks too, which doesn't help. No muscles below my chest activating postural support without serious conscious effort means that my girls don't stand out like they should either.

So what is one to do? Positive self talk is a start. Reminding yourself about biology, you can't trick genetics, physics or time. Your 14 year old self is gone. Love the 40 year old self instead.

Or do what I did. First, go shopping. Now I am not normally one to promote consumerism, but sometimes, well, you need something new. Or eight things new. You can spend $80 on a new dress, wear it to four different events (with different people of course) and boom - it's a $20 dollar dress. Or you can spend $80 at the second hand shop and get eight new things (like on did on Saturday). Next, put on some makeup and get your hair done. Then get an awesome picture taken so that you can see past those flaws with your own eyes.

LHSC wanted to share my story with the general public, share the good work that happens there. Here is the link to the article and the video that goes along with it. LHSC Inside Magazine Summer 2017 

Saturday, 10 June 2017

You must crawl before you walk

Have a good look at this photo. This is Erin Yungblut - from 2011. At this time she was skiing for Madill, racing the final leg of the senior girls relay. What a race it was - maybe you can tell from my reaction? I was pretty excited - that's me with my arms in the air.
This is Erin now, racing as a biathlete for Team Canada. She has gone a very long way - from Wroxeter to Canmore (and every Nordic nation) in a short amount of time. Talk about hard work! The hours of training she puts in everyday are quite astounding. If only I had her drive! Check out her Blog

This is the two of us at physio in Wingham last week.  We were taking a break from "learning to crawl". Now, she is the one cheering me on - how the tables have turned! Even though she is not home all that often we manage to pack in a meaningful visit when she is. I am so grateful for her ongoing support.

Crawling is HARD. OMG it was hard. My arms were shaking, my face was red and I was just about DONE.
It's a bit hard to tell, but here is what's happening: I am attempting to lift my knee off the mat and push it forward. All the while I am trying to stay balanced side-to-side (requires core) with the help of Mark and Erin. Some knee pull-through attempts were more successful than others :) Not bad for a first try. After that it always gets easier. Right?

Tuesday, 6 June 2017

The last frontier

Skin. It is the largest organ of the human body. Maybe you didn't think of it as an organ? It's actually more like a system, but let's not get too complicated. Multiple types of tissues working together; nerve cells sending and receiving messages, glands secreting sweat and circulating blood to regulate temperature and water levels, protecting our body from being viciously attacked by bacteria and viruses that surround us every day. That is a lot of responsibility. So what happens then when some of those jobs can't be performed? Do you die? In short the answer is no, but the longer version is what has been stewing around in my head for quite some time.

It all came into my mind yesterday. The kids and I were listening to the CBC show called "Out in the open" which focuses on topics that people are thinking about, but maybe not talking about. Yesterday's program was about the loss experienced by those who have had miscarriages - not a particularly uplifting topic, but neither are most of the topics that people don't talk about - which is WHY they don't talk about them. Either that or they are personal body issues that are considered to be just plain gross. At the end of the show they invite people to call or email their suggestions about a topic, which was when Ella suggested that I should. I said that I could talk about what it's like to live with paralysis because most people don't know.

So off I went, later that day, to the CBC site to make my pitch, "tell my story". While I was typing I ended up going in an unexpected direction. In the end, I realized that I had been thinking about it but, had never put it into words. Paralysis is so much more than just not walking. It may have started a few weeks ago when one of my Parkwood friends was sharing some of her stories of getting back out there after having had her heart broken. One of her dates was starting to do the "can you feel this?" (something my kids did with me very early on) and her response was "oh, so we're going to play this game, are we??"

But maybe I have been thinking about it long before that? Which is where even I get uncomfortable about sharing.

Do you remember in biology class seeing the image of the sensory nervous system, the one that shows how the lips and hands are super sensitive compared to all else? It shows them as grossly exaggerated? Well, even though this is true, the rest of the body is important too.

Okay, Julie. Just get to the point already? I miss it. My skin, that is. Not that it's gone, of course. But what it should be doing for me - I miss. There's the physiological stuff - sweat and temperature regulation, sure - but it's the being able to feel. Ever spoon with anyone? The handle is just as important as the spoon itself. Have you ever tapped people on the knee while having a conversation? Guess what? Can't feel that either. You know that feeling of being so close there is no space between you? No daylight or air exists in between? Not only does that rarely happen, I'd have to look and see if it is. I can't tell. Touch is so important - you don't know what you've got until it's gone.

I know I have talked about this before, and I know that not everyone is a "touchy" person, it doesn't score high on your needs for feeling loved, but it does for me. And now that two-thirds of my skin can make contact with absolutely no sensation or response? I need it more. I hug most people - even if I don't know you that well and sorry if you are not a hugger. My kids lay in bed with me most mornings even just for a few minutes. It's wonderful and I give them long hugs every chance I get.

Theo's never been a touchy/feely person, I would be the one to walk up to him and initiate a hug. We are in a different place now. When I roll up to him my forehead hits his bellybutton, maybe. It does not accomplish the desired effect. We have pushed-together twin beds (my side has the head/foot going up/down option) which make a King. I go to bed early, he stays up late. I sleep in, he gets up early. We used to go to our queen bed around the same time, read a bit, snuggle and fall asleep. Now it's different. I'm usually asleep when he comes to bed and he's long gone by the time my ears hear the first stirrings of morning. And I think he's afraid - afraid to touch and make my pain worse. But I'm not always in pain.

Our attempt at a selfie. I think we are too old to learn how :)
I have written about getting some motor function back - just a bit in my hip flexors. The reason that has happened is because I have been working hard to try and get a message to those muscles, only then can they respond. It's a multistep process. And I have had lots of therapists helping me. Perhaps what I need to get my sensory system - my skin - to respond is a continuous game of "can you feel this?" It should be part of my therapy. Theo should be my therapist.

Relationships are hard.