Sunday, 31 July 2016

Anniversary of being alive

We have just returned home from a week away. A week that just happened to coincide with the anniversary of my collision. It's not really something to celebrate, is it? Of course not, but it just so happened that there was no lacrosse, soccer, or camp and the cottage we wanted was available. Besides, I think it was good to be away. Thank you to those who sent me messages this week. Although many of them made me cry, I was warmed by the feeling of being loved.

This is how I got around. There were five little cottages in all, one kitchen and four bunkies. All on one island in Georgian Bay. Four of those cottages were connected by boardwalk which you would think would make them all accessible - they were - but not all independently accessible. Imagine Canadian Shield - it's not exactly flat. So we spent our days at the bottom of the hill, closer to the water unless we wanted to spend some time closer to the sky.

We spent the anniversary of my being alive together as a family. We paddled around our rented 15 acres, read books, drank coffee, swam, played cards, ate chips and got way too much sun.

Below you will find three more posts that are more reflections about our time away. These posts were written off-line or by hand (with pen and paper) and I have up-loaded them with pictures now for the full effect. Although, you would have been able to read my handwriting, my spelling is quite atrocious.

Deck Shower

Yesterday I tried out the "cottage gift" that Theo bought for me. A battery powered shower! Theo and the kids can scrub down in the lake – I don’t get in the water as easily as jumping off the dock - so I get to have a shower.

The grey seat you see in the photo is my travel commode. It packs up into a Samsonite suitcase with wheels - pretty convenient, but darn heavy. It is not as sturdy as the commode I use at home, but it works. Well, most of the time (if you set the legs at the correct height - right Mom?) The first time I used it at the cottage I tipped forward and landed on the floor. Theo was down in the kitchen cabin at the bottom of the hill so I sent him a text “I need your help. I’m on the floor. Don’t panic.”  I didn’t hurt myself, but I learned a lesson about balance on uneven cottage floors…

We wanted to find the best spot out of the wind and in the sun. The photo shows what they call the “sky deck” and with the red chairs you can see it for miles across the bay. I thought that tucked away in the corner was good, and it was close to our cabin at the top of the hill where I could be rolled back to get dried and dressed in bed. So Theo brought me all the equipment up to the top – bucket, battery and hoses. Then he carried up a large pot of hot water and went down to the lake to get a bucket of cold. He mixed what he said was a good temperature “showers don’t need to be hot, right?” He connected the leads for the pump to the battery and voila – I have more water pressure coming out of this shower head then I do at home!

It was lovely, until, as I am washing my hair along comes an old guy in a boat, just cruisin’.  It’s one of those situations – I know that if I can see him, he can see me and Theo is doing a terrible job being a curtain. So there I am, in the nude, on my commode having a shower. So much for being in a quiet corner of the bay! It didn’t deter me though; it felt wonderful to get clean.

I learned something else from this experience – it is possible to shower using only one bucket and one pot full of hot water. Talk about conservation!

Wetsuit for sale

I remember the advice a friend gave me a while back; that during the first year (post collision) there would be a lot of firsts and many of them would be hard to get through. I came to this holiday with that in mind.

One of those firsts that I had been thinking about for a while was the challenge of getting into my wetsuit. I bought it at the beginning of the 2014 tri season – I got one full season of racing in it. Anyway we brought it along knowing that the bay would be cold and due to my inability to regulate body temperature we thought it would help me last longer in the water.

Getting it on was hard. It was tough pre-collision, and that was when I had muscles in my legs and core that worked to squirm into it. Theo had to basically get me in as far as I would go and then pick me up by the wetsuit and shake me into it. Kind of like stuffing a sleeping bag into a stuff sack. It wasn’t pretty.

Once we got me into it I got hot, fast, and we knew I needed to get to the water before overheating. Upon arrival our host showed us how to use the water chair. It was something they had made in order for his brother (who has MS) to get into and out of the water. The challenge for me was getting onto the chair because it was quite a bit higher than mine. Taking a chance, we used the slider board to get me on but decided not to do that again – the distance being too far. Theo and Ella have done a lot of lifting this holiday. For quite some time we have ribbed Ella for not having many muscles…my tune has changed now. I have been encouraging her when she uses them – especially now that she is my leg lifter.

Getting into the bay was nice – as I was quite hot already – but l forgot how floaty a wetsuit makes a swimmer. It was actually quite awkward as I was used to my legs dragging through the water far below the surface, and here they were floating right on top! It set my balance off and I actually had to work hard at getting into a vertical position in the water. I never in a million years thought I would gladly accept the help of my 13 year old future lifeguard. Several times Ella helped me flip so that my head was up. It never was a dangerous situation, just a bit awkward.

We swam across to the next island, about 150 meters. That felt like an accomplishment – but getting out of the wetsuit was even more!

For the rest of the week I swam without the wetsuit and stayed in for shorter periods of time. I am going to have to do some reaserch about wetsuits that have zippers up the legs. I know I have seen one before, but I am sure it will


I started using #outofmychair this week. I have only just started using instagram and I get to twitter occasionally, but it just struck me that I should do this. I am not trying to boast about what I am doing, but I want people to see the kinds of things you can do with some help and a little bit of returned strength. I would not have been able to do the things I did out of my chair this past week without the help of Theo, Ella and Jane. Well, I suppose I would have been able to get out (no help needed to get onto the floor) but for sure not safely, or back into my chair. Someday I will be able to do this, I have been working on it, but I'm not there yet.

"Uses a wheelchair" - not "in a chair" or, heaven forbid, "confined to a wheelchair". These last two phrases have got to leave the language that is used when talking about people with disabilities. Someone I heard speak recently put it this way - "your body is just a way to move your brain from place to place". While I do believe this is true, I also think the body has a lot to say for itself. I used to like to push my body to do things, things that weren't always easy. Early morning boot camp at the complex comes to mind...

Being in my wheelchair is not a horrible thing, but it gets tiring and I like to make a change. Slowly I am learning the best ways to make that happen (aside from being in bed - which is easy to do). Because my chair is my legs, my means of getting around, when I do get out I need another mode of transport or I just sit. Which sometimes is just fine, too.
Ella is driving the boat...some were wondering!

It was a goal of mine, to lay on the rocks again. So we found the perfect spot. 

Yes, those are my feet, and I am paddling this kayak! It took some adjusting, but the third time out it was actually comfortable!

We paddled to a beautiful part of the island. Natural pink stone with black lines running through it. And yes, Theo brought pillows for me. 

No explanation needed. #outofmychair

Sunday, 17 July 2016

It wasn't the sun

This morning Theo and I drove out to the collision site. I had it in my head that I needed to know that the sun was not in the eyes of the driver, therefore making it difficult for him to see me. Even though both Theo and my friend Steve did this drive just days after the collision; and both reported that it was not, I had to see for myself. And so here it is.

Clearly you can see that on the stretch of road I was riding, the sun was not a factor. It is not even in the front window of the car.
355 days ago, this is what that road looked like at 9:15 am. 

We passed a couple of guys on bikes today, not in exactly the same place, but on the same road. Every time I see people on bikes I wonder, how did he not see me? The other thing I think about is what it used to feel like to ride on those roads. Especially that particular route. When I drive up and down those triathlon hills I think about what it felt like pushing hard to the top, wondering if I would ever make it, and then catching my breath as I screamed down the other side.

We will be away on "the anniversary". Which is just fine by me. It is certainly nothing to celebrate. Except that I am alive.

Thursday, 14 July 2016

Breaking a sweat

The most obvious part of having a spinal cord injury is not being able to walk. There is so much more to it than that, but here is one that changed today. I broke a sweat! Big deal? You bet. Excuse me while I get into Biology Teacher mode, but the spinal cord does more than just send and receive messages about movement and sensation, it also does this thing called homeostasis. Homeo what? Homeostasis means steady state. All of those things that need to be kept in a "normal" range like heart rate, blood pressure, water balance and temperature. 

Several weeks ago on one of the first really hot days I went out to the far garden where the asparagus lives. It is far from the house and a bumpy ride to get out there - so I am sure I had some help - and it was hot. I was so keen to help pick asparagus that I ignored how hot I was getting. I could still feel it on my upper body and I know my legs were feeling it too (especially in my black yoga pants which are all I seem to wear). By the time I got back inside I felt awful. Really awful. And I could not explain it. I got on to the bed and asked Theo to turn on the AC. It took about 20 minutes before the awful feeling went away. 

Later on one day while chatting with my Parkwood riders we got to talking about how we felt when we got hot. Brian nailed it - he said that his first summer he did not go out at all because when he got hot he felt claustrophobic. That's it! That is how I felt. He also said that it got much better for him the second summer. Which made me hopeful. 

Back to my lesson (I get distracted easily - ask my students). Temperature regulation requires the ability to sweat. Through evapotranspiration our bodies are able to cool. Water on the skin (from sweat) evaporates causing a cooling effect. It is the responsibility of the spinal cord to send messages to sweat glands to tell them to work. If you can't send a message you can't sweat and you can't cool down without applying water to your skin. My injury (T4) is high, above that level of that spinal cord function. The sweat message can't get through. I can't sweat. Well, I couldn't sweat, until today. For some reason that message got through. 

I still remember the first time I met Dave Willsie and he told me he had not bought antiperspirant in 20 years. He can do a workout of wind sprints and go straight to work - no shower needed. I thought no way. But it's true, some with para or quadriplegia don't sweat unless something is wrong - really wrong like a pressure sore or an overfilled bladder. This reaction is called autonomic dysreflexia and it has happened to me only once in this past year. It is quite the signal. 

I should have taken a picture of me with my sweaty glow, but I was too excited about being sweaty!

The ekso 1544 steps

The bike 10.32 miles

Wednesday, 13 July 2016

Building Bridges

I have to admit, when I first saw posters up around Wingham, I didn't really understand what Building Bridges for the Future was all about. Now that I have been a part of this campaign I have an insider's point of view and I can see clearly where it is going.

The sports fields at F. E. Madill are on two tiers, the upper field and the lower field, the lower surrounded by the gravel track. What stands between those two fields is a hill.
The muddy track and the hill between the two fields
In my previous life I took great pleasure in torturing my athletes by getting them to run, ski-stride, lunge, squat, skate or push-up their way up and down that hill. We have also had fun on that hill with our skis on and crazy carpets that live in the ski room. Now, however, that hill is insurmountable. To try and go down it in my chair would be dangerous; to go up, well near impossible.

I had always known that the fields were in rough shape, we played games and ran circuits on them. Running on rough terrain is just a good way to build up ankle strength, right? This past fall I went to watch and cheer on at a couple of ski team practices. This was still pretty early in my recovery, but being in my chair and on those fields I really got a feel for how rough they are. I needed to be pushed across the upper field, even with my free wheel on, and when we got to the hill to watch skiers practice their ski striding I thought no way. There was no way I would be going down to that track.

One of the key features of the Building Bridges project is to make that track and lower field accessible. They have hired Burnside Engineering to make a safe passage way which will allow anyone with a physical disability a way down. When I go back to Madill I will be able to get to that track and lower field, but only if there is enough money to make it happen.

The people who are volunteering their time to manage and fundraise for this project are fiends of mine. I was asked if I would help. Gladly. They raised $60,500 at the Gala (where I spoke) and they are $40,000 away from being able to start this project. The school board has committed to help with the drainage of the lower field and the accessibility path, but more money is needed before they will be allowed to bring in the machines.

If you are a Madill Alumni or a former teacher, if you ever competed on or participated in gym class on a sports field or if you just want to see a safe place for students and the community at large to get fit, please consider making a donation. Here is the page to go to: Building Bridges Fundraising Page and I am told that if enough money is raised they may be able to rubberize the track, how fantastic that would be for runners and rollers alike!

Even though I raised $2100 at the Gala by auctioning off those two bike helmets, I have not yet personally made a donation. It is about time that I did, and I hope that if you can, you will help too.

Saturday, 9 July 2016

Old wheels, new wheels

It's time. Nearly one year has passed. I decided that it was time to ask Theo to haul this out of the basement. I knew it was mashed somewhat, but it was much less than I had imagined. The rear tire was what took most of the collision, and the down tube was kinked. You can't see much of my helmet, it has a bit of blood on it, no major cracks and just a few dents in the interior foam. The seat, which I had only just purchased in July, looks untouched, the front tire still has air in it. It was a nice bike. I plan on sending this picture to the manufacturer and thanking them for designing a helmet to meet such high standards. Standards that allowed it to save my brain.

We took my new wheels on the Bruce Trail yesterday. It was a good test to see what they were capable of; and it was a hard lesson. Trail biking was my favourite kind of biking. Ever since I was a teenager I loved it - I was never as hardcore as my brother, but it was the only thing I ever skipped school to do. Getting out on the trail yesterday and feeling that every root, rock and slope was a serious obstacle and not just some fun bit of the trail, well that was tough.

The other hard part was not being able to go with Theo and the kids as they explored the falls. This was as far as I could go. I felt a little like a girl in a fairy tale waiting to escape from the tower where she was being held hostage...

I am hoping that my mountain trike will arrive soon and I will be able to get a little bit farther and a lot faster on a trail. I felt very ill-equipped in my Tilite, especially when the guy on the mountain bike passed me saying that the trail got quite rough up ahead - as though I would not be able to recognize the potential hazard I would face should I continue. I supposed he was just trying to be helpful, but the mountain biker in me could not help but feel insulted.

In the end though, we had a good day. How I have missed being in the woods. We'll be making regular trips to Owen Sound to see a specialist there, so we'll have plenty of opportunities to keep trekking the Bruce to see how far we can get.