Sunday 24 April 2016

Downhill is one thing...

Today has been a lovely spring day - happy medium warm weather and great company. Steph and Mike and the boys came up from the city and we toured them around the front lawn showing the layout of the new house. It is still very much in the planning stages - trying to work out which side the garage should go on and whether the kids rooms should be on the same side of the house as ours. The kids had fun outside walking around with giant sticks and having sword fights (making Steph only a little nervous). Dave was here for the weekend too, being helpful and collecting junk from our farm to take to his house for some strange playground idea he has. Anyone else is welcome to come and take some of our stuff...


Today was also the first time that I have been on the trail in my wheelchair. It was easy going on the rail trail, but getting off of it and on to the ski trail was challenging. Downhill is easy and fun so long as it is mostly level. I can navigate uneven surfaces with rocks and roots but we turned around when we got to the mud. I felt a bit emotional about it, remembering how much time I had spent on that trail on my skis or mountain bike. Most of it was alone time, my solitude time with nature. It made me wonder when I will be able to do that again. Downhill is one thing, but there is no way I am strong enough to navigate back up those hills. Yet. Whoever is with me is going to get one hell of a workout pushing me back up to the top. Any volunteers?

Friday 22 April 2016

Constant

Today I couldn't get away from myself. It seemed that everywhere I went I heard your legs don't work and won't work for the rest of your life. I also kept feeling this isn't happening to me. I can't explain why, but every once in awhile it pops into my head. And it makes me wonder, for how long will that keep coming up? When will my subconscious and conscious minds catch up with one another? I have been inside my head a lot lately as I have been working on what to say at the Gala. Trying to figure out what people will want to hear. And there is so much that I want to say.

I know one thing that I won't say is this: being paralyzed is like having a death in the family. Your grief is overwhelming, the stages coming at random unexplained times. Sometimes you laugh about crazy related things and many times you are crying, remembering, wishing, thinking. But, here is the difference: the family member who died was my legs and instead of having a funeral and saying goodbye I have to carry that death around with me everywhere I go. The legs that don't do what they are supposed to do are always there even though they died.

I wish I could say goodbye and stop being reminded that I have legs (and other important parts) that do not work. I don't know how long it will take for me to accept these legs for what they are, now.

Tuesday 19 April 2016

Reminders of the way things were

Oliver and I made our way to the Goderich beach on Sunday. It was just him and I for the day - Theo and Ella were out - so we decided we needed to "do" something - because we could! So yes, I am driving, got my official licence with restriction class 2A (hand controls). The next step is working on getting my chair in and out of the car - not an easy feat. We could have gone the route of the robotic arm, but my peers don't all have rave reviews and they take up a lot of space in the back...so I am going to try without and see how it goes. More on that later. We gave it a dry run in the morning, to see if Oliver could haul my chair in behind the driver seat and get the door closed. He (the 10 year old boy) is strong enough (and very determined) that he made it work! Tada! Mom and boy are free to go - so off we went.

We thought that a trip to the beach was a good choice on such a beautiful day. And the boardwalk is nice and flat, right? You would think so, until you get into a wheelchair and give it a try. I was glad to have Oliver's assistance. He was on his scooter and stayed behind me, ready to give me a push when I needed it up a slope or through the sand that had blown over the walkway. Here you can see my free wheel attachment (between my knees) - it is working well on uneven surfaces (the exception being my farm yard).


If you look beyond Oliver you see the beach and then the lake. What you don't really see is the beach grass that is growing between the playground and the beach. Three or four years back it was a group of grade 11 biology/enviro science kids that planted that grass. It is doing so well now they have been able to take away the snow fence that was there to protect it from feet. It made me think (again) about how I will do this kind of stuff in the future. I was the queen of the field trip at Madill. I used all my contacts, got grants for bussing and had volunteer drivers. I am sure some kids signed up for my classes just to escape the classroom. And why not? There is a whole world of possibilities for learning beyond four walls. We did tree and beach grass planting, beach and garbage clean ups, we hiked, toured renewable energy projects, visited the trout hatchery, recycling plant, landfills, sewage treatment and more that I have forgotten right now. How will I do these things with my students in the future?

Oliver doing his Ninja training at the beach - you can see the beach grass behind the swings.
Here are some more random thought that I have had lately - they don't make for a full post, but I thought I would share:

  • Does it mean something that I just deleted "Total Footcare" from my contacts list?
  • House plans are coming along nicely - the front yard is currently staked out with one plan.
  • I have achieved enough core strength to do "bird dogs" at physio - even got applause yesterday 

Sunday 17 April 2016

Jake

I met Jake while I was in Parkwood. He was in his mid thirties, super polite, all around nice guy. He was always wearing a Gilligan hat and he spent a lot of his time in the lounge, mostly playing pool. I saw him around quite a bit, but never had taken the time talk to him. One day I went to the lounge to escape the noise of the nurses station and he invited me to play pool with him. I said “sure” but told him that I would not be very good. He offered to teach me and said I could use the bridge. Once we got started he suggested that I take three shots for every one of his…

While I struggled to get any ball into any pocket we talked about why we were in Parkwood. Now, when I say that we talked, this is true, but I had to give Jake a lot of time and some help to find his words. It was a bit of a guessing game, he would start to say something but then could not remember what the noun was he was looking for. Eventually I learned that he had fallen off his bike and hit his head on the sidewalk. As a result, he had a brain injury that made finding the right words very difficult.

Jake had not been wearing a helmet when he fell off his bike. I am guessing that he wore the Gilligan hat to cover the scar and/or damage to his skull.

I was wearing a helmet when I was hit. In fact, we still have it - down in the basement in a bag - still covered in blood and gravel. Even with my helmet on I had a concussion and major damage to the skin on my forehead and chin that required plastic surgery. I, still, have trouble finding words. If I had not been wearing a helmet I am pretty sure I would not be writing, I may not have even been alive.

Two weeks from now I will be one of three guest speakers at the Building Bridges to our Future Gala fundraiser event. I plan to talk about how my helmet saved my life. I also plan on auctioning off a brand new one to get the fundraiser going.

So when you go out today, on this most beautiful spring day, and get on your bike - don’t forget your brain bucket. Because you just never know.

Friday 8 April 2016

Pay off

Every once in awhile it is nice to see evidence that your hard work is paying off. It happens when you least expect it - like when you take your kids out to dinner and a lady at the neighbouring table complements how well behaved your kids are; or going down to the freezer to see that it is still full of strawberries laboriously picked the summer before; or getting your 10 km run time below that of the time you ran it when you were 16; my friends who do crossfit are now thinking about their latest pb clean-and-jerk. Life is sometimes satisfying that way.

Because I have the same physio routine each week, I don't see the infinitesimally small changes that occur in my body - like increases in the strength of my core muscles. Yesterday, I got to see the evidence - loud and clear. I have not been on the Lokomat since December - four months ago. Back then, as I hung in the harness over the treadmill and "walked", I had to hold myself up on the armrests of the machine. Yesterday, as I started walking I realized that I was not holding myself up, I could actually swing my arms! I was so surprised that I didn't even realize it straight away. Look Mom - no hands! So what this means is that my core strength (especially the muscle in my back) has improved enough that I can hold my shoulders and head up - this machine used to make me fall forward. No more. And it only took four months!

This past week I have been making some changes to my medications, specifically those that are used to target nerve pain. I have been reducing one drug (gabba) over the course of a week before starting the new one. I know that it is not as serious as going cold turkey (I know someone at Parkwood who did that), no skin crawling or night sweats, but still major fatigue and much more pain in my back. I started the new drug (lyrica) yesterday, it comes highly recommended by my peers so I hope that it will help.

Nerve pain is more common in the general population than I thought. Those of you who have had it before already know, but those of you who don't - think of it this way. You know how your feet feel after you have gotten frost bite and the feeling is starting to come back to your feet? Kind of like they are on fire? That is how my feet and legs feel three days out of seven. There is no explanation as to why it comes and goes; but the pain around my injury line is my real target. That pain feels like a hot knife cutting through the soft tissue around my chest. It never goes away. If this new drug does not work, I have something else to try - Dr recommended - more on that later.