The main messages

I think that these grey days are starting to have a negative impact on my psyche. Today started out grey - so grey I could not believe it was morning. Yesterday had been so sunny, I was expecting the same for today. We did get some sun in the middle of the afternoon, but it did not last for long. These are the kind of days where, in previous winters, I would get out on my skis for an hour or more and the day would feel better no matter what colour the sky was. These days I get out of the house to go somewhere (usually therapy) but that is the often extent of my outside time.
The other day when someone was here, they made reference to it being "almost friday". I responded with my usual "woho!" and after realized, why do I care if it is a weekend or a weekday? I am at home, afterall, and not going to work, so one day should be the same as the next. But they are not. When I spoke to Wei Chen the other day on Ontario Morning, one of the things I said I was struggling with was my lack of interaction with other people. As a teacher, on a regular day I would see and/or talk to more than 100 different people. I miss that. So saying that I would be happy for the weekend does not make sense from that point of view. As a teacher, and anyone else who needs a break from their job would understand, weekends are essential down time. Now they are a time for me to get through.

Yes, true, my kids are home, and my friends are not working, so I get time to spend time with them, but sometimes, it's not enough. No, I don't want to be with people every minute of every day, and back in my old life I would have been joyous at the opportunity for five minutes alone. So these feelings I have are mixed and confusing. Theo tell's me that I need to have rest days, days that I don't have physio scheduled, and I know he's right. So instead of arranging time with a friend today, we went the the QB for coffee and later we played hockey in the driveway, read books and watch a movie.

That is the FreeWheel on the front of my chair

I think? she scored!

The pictures tell the story: XX vs. XY. Look! Julie is playing in net and she looks like she knows what she is doing! Ella is taking a penalty shot on Oliver because Theo, who hit Julie in the head with the ball, is now in the penalty box (aka Dog House). I feel better now, being outside helps. I could last for longer if my hands didn't get so cold. Those darn push rims just suck the heat from my hands.

The kids made supper tonight and we had a movie dinner watching "home" together. I liked it, a good message. When I asked Ella what she thought the main messages were, she said; "Family. Don't run from danger. Oh, and don't send your messages to everyone in the universe." So I will work harder on being happy at home with my family and stop running from what scares me. As for not sending my messages out to the whole universe? Well, here I go again.

My game of numbers

6, 10, 52, 110, 1284 are my numbers of today.

Tomorrow it will be six months since that fateful training ride that sent my life in this direction. I really don't want to get all that dramatic about it. It happened, and now we are doing our best to deal with it. We have come a long way in those six months, and of course we have had a lot of help and learned a lot along the way. Theo and I were talking about that yesterday on the way to London. How different life was six months ago. Now we know about hospitals, spinal cord injuries, insurance, the law, all of which we knew nothing about before - and I hope reading my blog is the closest you ever have to come to knowing.

Today, at Parkwood, I did 10.02 miles on the FES bike. This was the first time I have broken the 10 mile mark. They have this set up on the bike where the computer displays a city off in the distance, and a road that leads to it...no matter how hard I go I never get any closer. You would think that something that costs 10's of thousands of dollars they could do a little better with the computer graphics. The FES bike is the one where they stick electrodes to my legs to electrically stimulate my muscles to work in a pedaling motion. We met with my rehab Dr. for a follow-up appointment yesterday and he is of the opinion that the FES is the best form of physio that I could be doing. So, I will try again, to get one to have in my house.

While Theo and I were in London, the kids were with my parents. Ella learned how to play double solitaire with my Mom, and tonight we both won so we gave ourselves a score of 52. Dad taught her how to play poker - she is becoming a card shark! I find that we are starting to get more time to play games and do things together. Having no work for my mind to wander to is quite nice. But even though I am not working at school, I am working at home. After the accident happened we hired a case manager to help us navigate the system, do the paperwork and give advice. When I got home from Parkwood we let them go, and I have been my own case manager ever since. Paperwork, phone calls, e-mail, purchasing supplies and making appointments. I have decided that recovering from and SCI is a full time job, and then some.

Which leads me to my next point - back to 110. I worked with Barry again today, and we reminisced about my days at Parkwood. I was trying so hard to make things happen that were not - like moving my legs in the pool. Giving 110% all the time was actually counter productive because it just end up using other muscles not involved in the action I was trying to make happen - leaving me more than exhausted. I am slowly learning that it is not really a matter of how hard I work - if those sensory and motor neurons are going to come back, they will, and not because of how much effort I put into them. Once they do come back though, that is where the effort comes in - to make them strong again. This week in the pool I was able to pendulum my legs in the deep end, swinging them side to side - engaging core muscles to do the work like they never have done before. 110 all the way.

Still in second place on the leaderboard, I walked 1284 steps today in the Ekso. I had to skip last week, but this week I wanted to beat that 1018 from the week before. We are walking out in the halls now, which makes it easier because there are less corners to make. Turns take time and energy. I was really tired when I was done and rested my head on the lunch table for a bit before I ate. Next week I am going for more time walking, less time resting.

Those are this week's numbers - maybe I should buy a lottery ticket?

I ('ve) got a feeling

Now that I am singing the very dancy Black Eyed Peas (and so are all of you), I will tell you what that feeling is...it's a full bladder. The development of this feeling has been in the works for a few weeks now, maybe even a month, but I wanted to be sure I was correct before I wrote anything. Using my scientific mind, I have been keeping track and have finally come to the conclusion that I am right. The feeling that I have is that my bladder is full (and close to overfull). Ha! I can feel it!

If I think back, it started on a trip to Parkwood with Theo, probably back in December. We were on our way through Exeter (45 minutes from home) and I had this feeling, thought hum, I wonder what that means, it might be bad. Having had a number of different "accidents" of various kinds and in various locations, I was not sure what was going to happen. You see, it felt like it was in my bowels, so therefore I thought that nothing good could come of it. What happened next both surprised us and happened fast. I felt between my legs, my pants were wet and I was actually still peeing! Oh, and did I mention that we were driving in my new car? Luckily I had my backpack full of supplies (aka my diaper bag), Theo pulled over, I lifted myself up using the arm rests and he jammed something under me to soak up the rest.

The rest of the way to London I sat and moped, thinking about what the best way to tackle this problem was. I could not show up to walk the Ekso with wet and smelly pants. I had a spare pair of tights in my bag, but they would not work to ride the bike - they need to stick electrodes to the skin on my thighs, so they needed to be wide legged to roll up. After telling Theo that my "back up pants" were not going to work, he offered to stop at the Joe Fresh in the north end to buy me another pair of yoga pants (who needs LuLu when you have Joe?). We were already running behind, so I was not sure we had time, but I also did not have another suggestion. So we stopped; I have never seen Theo shop so fast - AND he got the exact right pants in the correct size. Nice. I got cleaned up and into my new pants (not easy for an able-bodied set of legs to do in the car) and we were only ten minutes late.

So ever since this happened I have been trying to take note of when this feeling happened, and what happened next. Even though the feeling feels like it is coming from the area that I would have previously associated with my bowels, it is not. It's a full bladder. I will spare you the details of how I worked it all out - but it's scientific because it involved measuring...and I could make a graph :) Of course it makes me think that more will come and other feelings will develop, maybe motor neurons too.

Timing is everything now. That feeling is like a shot across the bow, if I ignore it, there are consequences and they usually involve a lot of laundry.

Reasons to write

I have just realized that this is my 49th post. Theo says, "what? I don't think I have read 48 posts!" There are a few more that I started, but they just didn't feel right, so they didn't make the cut. I like writing, it gives me a sense of accomplishment and therefore some satisfaction. My own personal form of therapy. I finally got to meet with a psychologist on Friday. I have been on a wait list since I got home in October, it was one of the first calls I made - apparently mental health services are hard to come by in Huron County. Anyway, she is lovely, and I look forward to our discussions. I have been feeling better about things this past week, but I certainly need to develop some coping strategies for when I fall apart. Because I do, and sometimes I don't even know why.

I like this Dr., I feel like we clicked. She took notes while we talked (something I would do) writing in the margin, the topics to cover in the future. Although it was our first meeting and we were just getting to know each other, I learned a few things which I probably already knew, but now know are significant. First; five and a half months is not a lot of time to recover from a catastrophic injury. Which I guess makes sense, but I have nothing for comparison. And second; about blogging. As soon as we know our written work may be published, we change how we write. Because sharing our innermost thoughts and feelings is difficult so the truth gets clouded.

I know this applies in my case because I have changed what I was going to write several times, thinking, who is going to want to read about this? For instance, how many people are really going to want to know about my bladder and bowels and how well they don't work? And making things funny, when they maybe were not seen that way at the time. But if we don't laugh, we cry, right? There have been many situation where I am crying and Theo is trying to help, so try I find it in myself to say something to make Theo smile. The same is true for my writing - things can seem quite awful, but I end up spinning it to make it something positive. I think having an audience (you people who keep reading) helps me do this.

But I also write because I want people to know what's going on. Every week I meet someone who is following my blog or I am told by my parents, in-laws or friends of someone who enjoys my writing. So now I feel somewhat responsible to keep writing, to keep people "in the know". Besides, I know that there will be a ridiculous #2 (and then some) that I will have to share.  Besides, I want to address issues of accessibility, talk more about mental health, insurance, adaptive equipment, share more physio successes and talk about my family. And I have barely begun the share the road campaign.

Also, I love to hear from you! I talk to some people who say they are too shy to write a comment, which I understand. Others have said that because of various technical difficulties can't comment, which is beyond me so I will ask Selena for help on that. But I hear from many others, and it always brightens my day - the texts, emails and facebook messages that cheer me on. I love them all and I need them. I may not respond to them all - but please keep sending them.

So I will keep writing.

It feels like not much is improving with my body anymore, but Bill says that is not the case. Last week I asked him if he was still seeing improvements. You know what it's like, it's the same as your kids growing - you don't see it because you are with them every day. I am with me every day, more or less feeling the same and doing the same, so the small changes go unnoticed. But they are there. And we see it in the pool too. All three of us (Tammy, Elaine and me) would swear my legs were moving under the water. Ever. So. Slightly. And the effort it took for me to do it was absolutely exhausting.

And the Ekso this week - 1018. Progress.

Ah, snow

Most of the folks that I have talked to, who rely on wheelchairs for legs, all agreed that snow sucks. Snow is super tough to push through, like riding your bike on the loose sand of a beach. It gets caught up in the tire treads, it jams in the front wheels, it picks up salt, sand and anything else you roll over. Then you bring it into the house. It's not easy to take off your tires like you take off your boots. You wipe your tires down with a towel or put one under the chair while it melts, but you still leave tracks behind. It's messy. I have a second set of tires for outdoors, knobby mountain bike type tires, that we put on if I am going farther than to the car. I don't even have to get out of my chair, Theo lifts up one side, pops out the tire with the push button quick release and installs the other tire. It works brilliantly - when he's home.

You know how there are lots of different types of snow, depending on the temperature? Well, I think that will be the case for me - it will depend on the type of snow. Today was cold and crisp and the snow was light with a hard base of ice below. Good enough conditions for me, and I loved being out there today. I got to see the kids do their somewhat deadly snow wrestling.

I was prepared for it. I had on my new snow pants and my grippy mitts. The snow pants are not ideal as they require some maneuvering to get on with lots of rolling side to side to get up. And the mitts? Well, they were doubled up - push rims are made of aluminum and they are super cold to handle - forget heated steering wheels, I need to invent heated push rims. So far as I could feel, with the exception of one thumb, I was warm. As my skiers would say, I know how to dress for winter.

So I pushed my way down the driveway, all the way to the end. I am sure I saw a car go by whose passenger did a double take when they saw me out there. So I wondered today, as I was outside with the kids, if any of the people who said "snow sucks" loved snow like me before they found themselves to need a wheelchair?  Because for now, I think it is okay. So long as it stays cold, I will welcome the snow. Down the road, I may say something different, but that will be then, and not now.

---later---

So these were all my thoughts before I got back into the house. I needed to come in. So Oliver held the door for me, and held my chair as I transfered into bed to undress. Theo was not around to change my wheels, so I rode my outdoor tires into the bedroom. Because those tires are so much fatter, my brakes don't work and I have not mastered the transfers-with-no-brakes thing yet. So there I am sitting on the edge of the bed now, Oliver gone back outside, and I start to slide. You know how slippery the inner lining of snow pants is? Now I am fighting to stay on the edge of the bed, my legs spasm out straight which forces me to work even harder to stay on the bed. Boots still on my feet, I am working to stop my leg spasm so I can get one leg up and then the other. By now my heart is racing from adrenaline (not wanting to land on the floor) and work - every muscle from my diaphragm down is taught - and not in a helpful way. It took me 10 minutes to haul my legs up on the bed, get my snow pants and my boots off. I was done. It was the hardest work I have had to do in a long time. Harder than physio, harder than swimming, even harder than the exoskeleton.

So, snow? I guess, but I won't go it alone next time. Just in case.

MIA

This post is dedicated to all my past, present and fellow coaches.

As I write this I am on hold with the Ministry of Transportation. For me, they may as well be the Ministry of Magic, as they seem equally impossible to get a hold of. I did my driving assessment on November 19th and have been waiting ever since to get my licence back. They are holding my freedom hostage. In Washington state they don't even revoke licences after a spinal cord injury! 22 minutes and holding...sorry, on to more relevant matters.

The following is not something I remember, but have been told. When Theo was let into the hospital room in Goderich, where I was being prepped for air transport to London, he was able to speak to me, and I to him. I said "I'm sorry" and that I could not feel my legs. To Theo, it wasn't important what I said, just that I could speak to him and that I appeared to still be me. Many people who visited me during my hospital stay said the same thing - I am still me. I am just finding myself in a different role than what I am accustomed to. I am adjusting, but slowly. Last night I had a bit of an epiphany (thank you to the inventor of spell check), I'll explain.

I had a message from a former student/athlete on Wednesday night. She had gone up to Duntroon with the team for the first Nordic event of the season. They had a fabulous day with lots of time on snow, but she expressed to me how much I was missed. I was not there to cheer, encourage or laugh with them. This girl, being wise beyond her years, went on to explain how she understands that I have my own race to train for now, and she was thinking of that as she was skiing up the biggest, toughest hill. She made me cry as I read her message.

So I was thinking of this last night after getting home from another day of Eksoskeleton (875 steps by the way). I miss that part of my life - coaching is a part of me. But I have new sidelines to cheer from now. The people I have met in therapy, both in Wingham and at Parkwood, all have the same end goal - improvement. We don't know what the finish line looks like, we have not pre-skied the course and we don't know how long it will take. But we know we have to train our butts off or we will never get to find out. So we cheer for each other. We coach each other. I love getting to spend time with these people, share stories, ideas, things that have worked and/or not worked. We make plans and we even compete. They are my new team.

So although I don't get to coach, I am being coached - another role reversal. Before, when I was training, I had training partners. Now, I have several coaches and many mentors. I have a new respect for the difference a coach can make. A good coach makes you want to attend practice, tells you what you have improved upon and what you still need to work on. They make it fun, know how to push you to do more and celebrate in your successes.

I had a dream yesterday morning. It was the first dream since my accident in which I was NOT walking. I was in a pool, and I was saying to someone who was with me "well, if I am paralyzed, then why can I do this?" and I proceeded to move my legs under water! I think this says a lot about what is going on in my head. It says that swimming is helping. It says that my coaches are making a difference. We have seen a lot of improvements in my abilities in the pool and on land over the last six weeks. I think it also says that I am as stubborn as I ever was before, as many would attest to - you can't tell me I'm paralyzed...

So although I am MIA from my regular role as teacher, coach and mentor, I find myself settling into my new role as athlete, teammate and student. Next week we are putting up an Ekso leaderboard at the Parkwood PT gym - let the competition begin!

So... 43 minutes later and apparently I have a letter in the mail! Woot woot! What will it say?

Ridiculous #1

It's been a while since I have written. There are many reasons, like the spending holiday time with the kids, our families and friends. But mostly I just feel like I don't have much to say that is new, and I don't think I want to write about how frustrated I am. Every day. Frustrated. Last night I was helping Ella make pizza for dinner, and she would be able to tell you how many curse words I put on top of that cheese. Lots. *&%$ing kitchen. So instead of complaining, I'll write about the frustrating things that are just plain ridiculous. There's lots, so here is just one.

In my previous life I didn't pay much attention to wheelchair parking spaces, accessibility at public spaces or sidewalk ramps. I didn't need to for my own purposes, so it was not on my radar. Usually, you see wheelchair parking spaces close to the entrances of buildings with a ramp to get up to the door. I am beginning to discover that there are many places that are not accessible, but also that there are many people who don't know what is required for someone in a wheelchair - even though they have a wheelchair parking permit in the window of their car. 

This is all preamble to the ridiculous #1 story...Last week on Monday we went to the pool for "open swim" - a better time to go, less people in the pool and change rooms. We parked in the second wheelchair spot because the first one was taken. As I am not allowed to drive yet, Theo is the driver and I need space on the passenger side to get out of the car. This is why he parks to the left hand side of the spot, giving me room to get out. When I am driving, I will take the opposite approach so I have enough room to get out of the drivers side.

So imagine our surprise when we come out from the pool an hour and a half later to see this:

 and this:

Note the location of the middle of the car - RIGHT ON THE LINE. I suppose it would be one thing if you couldn't see the lines because of snow, or something like that, but come on! I imagine the thought process that went into this parking job: "well, I need to be close to the building because it's kind of cold, and I don't move fast, and I have a wheelchair parking permit, so I'll just squeeze my car into this space right here. There, just fits!!"

We've all done it before, squeezed into a space that seemed like it might be too tight, and then been joyus when we came out with our side mirrors still intact, right? But I guarantee, that when you parked like that, it was not between two cars with wheelchair parking permits in spaces that were painted blue!?! No way.

So I left this lady/man a note, politely describing why their parking job made my life difficult and asked them not to do it again. It was laughable at the time, but it sure would not be funny if I had been the driver and had not been able to get into my car. So I'll leave you with this - start looking around as you are out and about. Is the sidewalk level? Are the doors accessible? Are there parking spots with a ramp to get up to the sidewalk? I have not done so yet, but I will be writing a letter that I will carry around with me so that I can drop it off as I see accessibility issues, ahem, Wingham Subway, 'nough said!