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?

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.

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 

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.

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.

Holiday Bliss

It is so quiet here. Everyone slept in, and when we did wake up, there was no furnace working hard to heat the house, no traffic, not even any birds singing or squawking. Just quiet. We have finally reached the point in our holiday where everyone is rested and relaxed. This year has been a bit different than last year because we all arrived and are leaving at different times. Lara and David and their families have gone home, back to reality. We have two full days left (before we fly home) and even though the weather does not look to be as warm as it was when we arrived, we will make the best of it. Today we will head back to the beach to check the surf and maybe walk in the sand. Theo wants to tour the Whalehead Club and the kids want to go to the Nature Centre and maybe the bumper cars if they are open.

Going to the beach was another new first for me this year. The beach wheelchair was pretty versatile and easy to move on the sand - but not by me. The huge inflated tires worked well on the loose sand, but there are no push rims like on a regular chair, so I have to rely on others to move me. We talked about ski poles - they would have worked well! There is a brake on one wheel that kind of worked, but one day I was sitting with my back to the ocean and turned just so to take a picture down the shore and all of the sudden I was rolling backwards into the ocean! It says right on the chair NOT TO BE USED AS A FLOTATION DEVICE. My scream caught Theo's attention and I didn't have to try out the water (which is 11 degrees).

The house my parents rented this year had an elevator which allowed me to access all three floors. Vacation homes here are built to have the living space (kitchen and living room) on the top floor to enjoy the views and bedrooms on the second and first floors. The elevator was on the outside of the house and although I could operate it I could not close the door on my own (it swung out) so I needed help anytime I wanted to come or go. Carpet in the house also made getting around on the bedroom floors a bit more challenging although I did get to see my sleeping children! Going up and down in the elevator meant I also didn't get to use the stairs and the main entrance - I missed out on the family kafuffle of 15 people coming and going - you know, the "get your shoes on!" "where is my hat?" "have you seen the ball/chalk/helmet/car keys?" which is always a part of the holiday experience. I wish I had taken a picture of the shoe line up at the front door!

Chalk drawing made a comeback again this year. The cul-de-sac street we were on made for nothing but bike and scooter traffic which was fantastic for the kids. We even ran out of chalk and Ella used her own money to go to the store (on her own!) and buy more for everyone to use. I even chalked some without falling out of my chair and the kids made wheelchair accessible paths and parking for me! We had a kayak for the week and with David's help, I got into it with Theo out in the Sound. Although I can't hold myself up with feet on the foot rests, I was able to paddle. I have just enough core recovery to keep myself upright. It was not a long ride, but it was my first.

The best part of being down here is being able to get out of the house and just roll - no snow, no gravel, no traffic.

First Flight

For the ninth year in a row, we have made our way to the Outer Banks of North Carolina for our March Break. Getting here this year...was a little bit different. In past years we have done the trip in the car, taking 2 days to drive, either straight through or with one overnight. This year we flew - and what an adventure that was! The kids have virtually no experience with flying (Ella few to Newfoundland when she was two) so they were pretty pumped about flying south "we can't be late or we will miss our flight!!!" It was a long day that went something like this...

We took a wheelchair taxi from the hotel to Pearson and checked in at the "special assistance" United Airlines counter, where our bags were ticketed and we picked up our boarding pass. You would think that she would have made a note in the computer that I was in a wheelchair (she did tag it) - it became evident later on that this was not the case. (Yes - my travel agent called ahead of time to tell them). Then we went to gate 15 where she told us we needed to wait to be called, which we did. When they called for 10:25 or sooner flights we got into the line and as we got to the head of the line an nice lady with a walkie-talkie said we should not have been there and that we had been given the wrong information - we should have been directed to the special line for people who require assistance (the same line the flight personnel go to) to get through customs. Getting to this line allowed us to skip the HUGE line that everyone else was in and get through customs faster (I am not sure how any of the "regular" people got to their flights on time).

Boarding passes in hand, we reach the gate where, to our surprize, the gate attendant informs us that she was not informed that I was requiring the assistance of an aisle chair (the skinny little chair that takes people who can't walk down the aisle) Side note: and I mean skinny - you sit on the chair and your hips are at the same height as the armrests - how someone larger than me would do it, I have no idea. I assured the attendant that my travel agent had called ahead (which she had) and we had to sit at the gate until they brought an aisle chair for me to use. We were not the last ones on the plane, but we certainly were not the first and they changed our seating arrangement so I did not have to go so far back (but they did not bump me to first class). Oliver and I sat in row 9, Theo and Ella were way far back in 21. It was my understanding that someone immobile like me was to sit with someone who would be able to assist them in an emergency. Don't get me wrong, Oliver and I had a great time flying together, but he would not be carrying me off the plane!

Our flight from Toronto to Washington (Dulles) was delayed leaving (slow customs - like I said) by at least 30 minutes. This made me anxious about catching our flight from Dulles to Norfolk - we only had a 55 minute window - and silly me thought that they would have let the landing gate know that I would need assistance. They didn't, so when we got there, and there was no help waiting, Theo piggy-backed me (did I mention I weigh 146 lbs?) to my chair which was outside the plane (thank goodness). We had sent the kids ahead and the lady who met us there said that our gate was way across the airport. My response was "well please push me or we will never get there!" She radioed her supervisor that we were coming - and everyone (but me) started running. Poor Ella really needed to use the bathroom (one whole coke consumed on the plane) and I said "sorry - no time pick up the bags and run!"

As we were making our way there a guy on a trolley stopped, asked where we were going and picked up Theo and the kids. I wish I had been able to get a picture of them whiz by us - they were having such a blast! Meanwhile, this 50-something woman who had not been in training, was running while pushing me - what was easily a mile from one end of the airport to the other (no joke). I tried to help her in a couple of spots (like up a ramp), but she just said (while huffing and puffing) "no mam, don't help, it's okay, my supervisor knows we are coming". When we got to the gate there was an aisle chair waiting for me, so Theo gave the kids their boarding passes and sent them ahead. We had to go down an elevator first which, when we got to the bottom, emptied out onto the tarmak! We rolled out and the kind lady who had pushed me all that way pointed to the plane that we had to board - that had stairs down to the tarmak. No ramp in site! So by now at least 10 minutes had passed from the time we disembarked one plane and had been running to the other, and we sat around for at least another five when the pilot came down and said "you are the last passengers?? you are it!" 

What would you have done? Waited for a ramp to come (they said it was on it's way) or done what you did to get off the last plane? So I scooched my bum to the edge of my chair and wrapped my arms around Theo's neck. Ever so slowly and carefully he lifted me up and crawled up the stairs and carried me all the way to my seat - third from the back. There was a nice lady at the very front of the plane who offered us her seat, but we could not figure out how to lift that arm rest (it was different from the rest) so off we went to my assigned seat. I am sure that I kicked a few people along the way and I cried from exhaustion, stress and relief when I got into my seat. But, we got there:)

The day before we left, Theo and I had talked about what our concerns were about travelling. He was worried about catching our first flight (sometimes our kids do not move as fast as we would like them to in the morning) but I was worried about that second flight. Turns out we were both right in the end. And that is not the end of the "United Airlines get an F for accessibility" story because when we got to Norfolk we had to wait at least 15 minutes for the aisle chair to arrive - and that was even after all the other passengers had gotten off the plane. I sat looking out the window watching the luggage come off the plane, including my wheelchair and seat (separately!). Don't get me wrong, the airline fails, not the people. Most of the people who helped us were wonderful - including my runner - but there are some serious gaps in communication. They should have had assistance ready and waiting. Too bad we have to fly with them on the way home - I can only imagine!