Tuesday 22 December 2015

Lookin' ahead

At the Co-op today, while picking up what will be the last bag of hen food (chickens anyone? they are quite nice birds and are wise to wild dogs and raccoons) Theo, on impulse, bought a $25 (on sale) box of firecrackers. You see, our people from "the 6" were here for a visit, and he thought that there was no better way to show them some fun country life (when there is no snow) other than a good fireworks display. And, it was our way to welcome winter and celebrate the solstice, hooray for days getting longer!

It was perhaps not the best night (I mean weather) for a good display - some slipped away in the fog - but you could not beat the temperature and the darkness for fireworks.  In the summer we go to the Greig-Clark's for July 1st and we get home so late it is practically the next day, celebrating winter is way easier on the sleep schedule, and this winter they don't melt away in the snow half exploded. Anyway, it was a bit sad for me, as I had decided to stay inside and watch through the family room window. This turned out to be the wrong decision. You see, I was tired, mostly from swimming, and I didn't think I had enough energy to get out there.

The first set of crackers went off to the left of my vision, my chair was out of reach, and my phone on the kitchen table. Theo came in to see what I thought, and he was full of remorse that I could not see them. So off he went saying "I am going to go light the rest of them". And so he did. The kids loved it, I saw some, but most of them went over the top of the window and all I could think was if we burn down this house we have nowhere to go. But it didn't burn down, and the kids had a blast - they looked like a bunch of pagans dancing around the fire - certainly not observing the safety rules we observe in July :)

So that made me feel better. It also made me think that we really should make the winter solstice our new year. When we were at my parents' house on Sunday, my father made a toast "to a better New Year" and it didn't strike me until later what his true meaning was. A better New Year, for us all, because what happened to me shook everyone in my family to the core. And now, I realized tonight, that I have to get back into life. I can not sit and let the fireworks happen without me.

Although recovery is my full-time job right now, I have to do more than just that. I have to cook some food, help out others, do things with my kids, go for a hike. I need to seek out those in a similar situation to me because my life must go on and I have a lot of questions about what that life looks like. I have gathered some sage advice from the people that I have met so far; mind my skin, snow sucks, I'll give up my slider board and training wheels soon and laugh a lot. All great advice for the start of my new year.

Monday 21 December 2015

Oh, my aching...triceps?




I feel like I am getting everyone's hopes up by posting these pictures, but I decided I should anyway. What the pictures don't show is the work that has gone into getting me into that standing position. Ever since I was at Parkwood, my therapists and I have been working on the motion and muscle action of the core that leads a person from sitting to standing. At first, I didn't understand the importance of the movements that we were doing, but then Bill made it clear - that this was all a part of a progression. And here you see it - standing. What you should also be able to see is Mark and Bill holding onto my hips, butt and knees. I can't feel how much pressure they are putting on those locations, but I know it's there, otherwise I would still be sitting on the edge of the plinth. 

There is a progression to these photos to (taken by my brother David) where you can see in the first one, my butt quite far back. The second one shows that I am trying to bring my hips more forward, and the last one is the end result before I say "I'm done". I lasted about 20 seconds - which Bill may tell me is an exaggeration - but I'll go with it for now. My triceps were screaming at me because they were basically holding up the weight of my entire body. I am going to be getting a fancy piece of equipment called a standing frame - maybe I should spare the expense and just hire Mark and Bill to hold me up at the kitchen counter so I can make supper...

I asked Bill today when I could expect my arms to not be crying out for pain relief at the end of the day and in the morning when I wake. He said "never", but then changed his mind and said "not for a long time". It's almost been five months, but as I do more, they take more strain and are worked harder than ever to carry my body around. I was beat just rolling around the mall last week, and that is the smoothest surface that there ever will be. 

Monday 14 December 2015

Tweepy

Nancy and I were up at the school today after physio and while I was in the office a very polite young man introduced himself to me. His name was Austin, and he said he would be in my class next semester. I asked him what grade he was in and (clutching his iPad in his hands) he said grade 9. I said that I was pleased to meet him, but that he would be having another teacher next semester, that I would not be there. He said "oh, that's okay" and "it's good to see you here at school". Such a nice kid. I wish I would be well enough to be back. I look well, but for now my full time job is recovery.

I know I have said before that I am tired, and everything I do makes me more tired, but even I forget how all the little things add up - and sometimes I slip back into my old ways of I can do it all! So last week at Parkwood I did my catheter twice on my own - no big deal right? Well I didn't want a repeat of the week before [Jane had to go and get Barry to pick me up off the bathroom floor - Barry's first words were: "Well, does she have her pants up?" I did, and I only injured my pride.] so I was careful and decided not to transfer to the toilet, so just stayed in my chair. Think of it this way - try pulling up your pants while sitting on them in a fabric covered chair. Get them up to your knees, sit in a chair, and then try to get them up to your waist without using your feet, legs or hips to boost you up. Try it and you'll see that three hands would be, well, handy, and you'll understand why I have bruises down my forearms. Here's another - swim for an hour, then try getting out of a wet bathing suit while laying down on a bench - again - no use of muscles below your armpits to help you out.  All these "little" yet very essential things add up.

So last week I did my regularly scheduled therapies: Monday and Wednesday physio, Tuesday in the pool and Thursday to Parkwood plus we had a meeting Monday afternoon, I watched the kids swim and we went to Subway, Wednesday we went to the Hulett Christmas concert and on Thursday Steve and I added an hour long stop at Motion Specialties in London. By Friday I was more than tired. I was done. Finished. Exhausted. Spent. I did not get out of bed on Friday until 2 pm and then only to have a shower (which is also exhausting) and go back to bed!

Everybody expresses themselves differently when they are tired. Lara and I have invented words like hangry (hungry and angry) and tungry (tired and hungry) to apply to our own kids, well my new word would be tweepy - tired and weepy. Because by the end of any one of those days, when I have added in too many "little" things, that is how it ends. Usually in tears. Poor Theo, because there is nothing he can do or say. By this point everything is awful, nothing will ever get better and there is nothing he can do but put me into bed and cover me with the duvet.

I put on a good show when I am out - that is I look and sound okay- but inside, my body is still healing, and spinal cord kind of healing takes a long time. Funny that I write this now, because people in the know have been saying that to me all along. But now I write it to remind myself, as well as others. I see it as a part of my job now, to teach others what it is like to have a spinal cord injury. And one of those things is the amount of time needed for healing - that although the injured person looks good, that is a short window, and boy you don't want to be around when that window closes.

So today I leave with this quote, because I was inspired by a friend who sent me a message that I only read today. Thanks, Duff - that is when I cry, and this is how I keep going.

"Now is no time to think of what you do not have. Think of what you can do with what there is." --Ernest Hemingway

Sunday 6 December 2015

Things that make me sad

This has been brewing in my head for a while now. Sadness comes when I am tired, sick, and sometimes at odd and unexpected times. A couple of weeks ago I went to Goderich for the first time since July 29th, and as we drove right past the spot where I was hit, I was not sad. I was flabbergasted. In my mind's eye I had pictured the stretch of road where it happened and knew it was flat, but I had not pictured it correctly. It is straight and flat for at least three kilometers. Unbelieveable, but it did not make me sad, just fueled my fire of frustration. I'll save that for another day. I have plans for it, you know.

Dancing. About two weeks prior, the kids and I went to the tent sale held by the shoe store in Wingham. I found these lovely high heeled dancing shoes, and since they were only $10, I bought them. I decided that Theo and I would start dancing again! We had taken dancing lessons before we got married 16 years ago, and we had talked about doing it again. I even stopped in at the QB to show Les. Last weekend those shoes made an appearance...on Ella's feet. Seeing those made me sad for all the dancing that we may never do again.

Jeans. A few weeks ago Lara came to help me sort my clothes and put them on shelves that I would be able to reach - no more sending Theo up to find a specific t-shirt. So Lara, being the clothes-hound that she is, found a few gems in my piles. One of those was my favourite pair of jeans that Lara and I had found at "Bibles" second-hand store back in the spring. Silver jeans, for $5, that fit beautifully. These jeans fit, snug, just right, and had shiny buttons on the back pockets. Neither of these things work with my "new" body. My lack of abdominal muscle function means that my once flat-for-a-forty-something-mother-of-two stomach is no longer. Tight jeans are pretty hard to get up, I would have to roll back and forth in my bed a lot before I would be able to get them up, and even then, they would likely not do up. And the buttons? Can't do those either, they create skin issues. The bling I can do without, but the shape of my body I miss. Immensely.

Snuggles and holding hands. I lost three months with my kids, and a future not clouded by life with a wheelchair. So now, when they snuggle in beside me in bed it brings tears to my eyes. What I missed and what I almost missed - the rest of their lives. And how about going for a walk? So now I roll along, and sure the kids can walk beside me, but I can't roll and hold hands at the same time. There is just something so special about walking along holding your kids hands, their's so soft and comfortable in your's. Perhaps it is because you know that they won't want to hold your hand forever.

Flutter kick. Being in the pool last week felt a lot closer to normal then ever before. I was able to stretch out my stroke so that my speed also increased. Doing this helped bring my legs up closer to the surface of the water instead of just dragging along in a bent position. But that is all they do, just drag along behind me. I may never be able to do flutter kick again. That may seem weird to you, that I would miss that, but it really is the one activity that can not be replaced by something else. My cool-down flutter-kick-and-chat with my training partner in the pool will be no longer.

Feeling skin on skin. This is so incredibly personal. To not be able to feel Theo laying beside me sends my mind to some dark places. We all know about the healing power of touch...how can I heal my body if I can't feel? This is where my soul aches the most.

There are undoubtedly many other things that will make me sad over the course of the next weeks, months and years. Talking about them helps, and so does crying. Grieving the losses will not end any time soon.

Sunday 29 November 2015

404 and counting

The impacts of a spinal cord injury depend on where the injury occurs. For me, (T4) blood pressure regulation has been challenging. Back in Victoria Hospital my nurses (lovingly) tried to get me up and into the shower but instead I ended up back in bed with my feet elevated - it really was funny because they tried so hard to prevent me from blacking out. Alas, no shower! As soon as I had my feet up I felt so much better. Those early days were hard, even just sitting up for short periods of time was difficult.

Now, my blood pressure is better. At my family Dr on Friday the nurse said my bp was "on the low side" - I corrected her and said that 101/65 was actually quite good! Now I can sit for longer and with the right help, I can "stand". There are a few different ways that I have been able to be completely vertical. The first was the tilt table where I was gradually (4 minutes at a time) brought to almost 90 degrees. From there I graduated to the standing frame which I rocked the first time, but failed miserably from then on. After that I was promoted to the Lokomat and I wanted to keep walking on that forever because it felt so good, even when I was finished. I have also been standing in the pool and last week we were in the Wingham. The wall in the middle of the pool with the bar along the top was the safest and best way for me to actually do the work of pulling myself into a standing position. It felt great.

On Thursday I graduated yet again. Ekso bionics makes the exoskeleton that Parkwood uses for SCI rehabilitation, and I got to walk with it! It is not a quick piece of equipment to get into, and it took three therapists to supervise me and run the machine. So even if I tried, it's not something that I could throw in the back of the Element and bring home. Learning to use it was pretty straight forward for me - I got to call upon my ski technique (nose over toes) to weight transfer which allows the opposite leg to swing through to take another step. It was hard, but I could feel it working. I was up for 26 minutes, walking for 14 and took a total of 404 steps. And it just about killed me. Of all the therapy I have done this was the hardest. All the while I was walking I was thinking about my blood pressure and how long I could keep going. I knew it was taking a toll on my cardiovascular system. When I got out of the ekso I wheeled over to the plinth, hauled myself up on to it and lay with my feet up over a wedge for half an hour while Theo went to get lunch. I felt like I had run a marathon.


As you watch the video, have a look at my face. Although I look totally bored, that is my face of concentration. I hope to be able to do it all again this week!



Tuesday 24 November 2015

One month home

This afternoon I was in bed for an hour, hoping for sleep but grateful just to rest. It was during this time that I began to realize that this is where my ideas for writing come from. I guess I have not been resting much this month. Well, I knew this already. You see at Parkwood, when I had no one to talk to, I would write. Here at home there is always someone to talk to or something to do therefore much less writing is getting done. The other reason I wrote was to process, here I have Theo to help me process, which is nice because he talks back to me. So anyway, given some time to think this afternoon, I thought I should write a bit tonight - an update of sorts. After dinner.

Dinner and a round of spoons make me lose my flow. Let me see if I can get it back.

Since I have been home (one month) I am a little bit stronger, have landed on the floor only once and I have only one scabbed knuckle. I do not have the core strength to take casseroles out of the oven, but I can turn off the oven, open the door and pull out the rack so it won't keep cooking. My morning routine is becoming a little more routine and I have (most days) been on time to my morning appointments (10 am in Wingham). I am still fighting with E. coli in my urinary tract. My awful tasting tree juice (thanks Erin) may be working as I feel way better today then I did on the weekend. Two earlier rounds of antibiotics did not really knock it back - so my Dr agreed I should hold off on the third round seeing as I was less "symptomatic" since taking the juniper drops.

Physio is going well. Bill regularly comments on improvements in my core stability and Elaine says she sees my balance has too. I have started in the pool again doing a bit of strength, stretching and cardio in each session with Tammy. Today we swam in Wingham to try out the temperature and I lasted for an hour before I started to really feel the cold. It's hard to balance the stationary time with the moving (and therefore keeping warm) time. It's hard to decide when to say "I'm cold" because I want so badly to stay in and swim. My body's ability to maintain homeostasis is so out of wack, I don't even get goosebumps. Last week at Parkwood I got all measured up for the Ekso, so this week I will be walking. Check out Able Bionics who gave a pitch to Dragon's Den and got all five dragons to buy in! They are doing work that I may be able to tap into in the future. For now I will try and video my walking and post something here.

My endurance for being out of the house is pretty low, and my bladder only has a four hour window. I have not been very successful doing catheters in other places so we try to not stray too far. So I have had friends and family doing shopping and picking up things for me and the kids. Winter boots always seem to be a challenge and seeing as I have not been able to see what is in the stash upstairs, we just bought new. I know, Theo could look, but I think that room where we keep "stuff" has become so overwhelming, he does not even want to go in there. That is where online shopping comes in. I have lots of friends (um, Selena) who do all their shopping online. I have, up until now, not really been that keen on it. I like to feel the fabric in my hands, and try it on, before I buy it. Everything is different now, so why not? And man it is so easy! Doesn't help that it's "Black Friday" and every website had a sale. Credit cards are so dangerous. So, we got new sheets for the big bed, the kids and I have new boots (thanks Nancy) and we also have some new clothes on the way. When did I become such a consumer? In my mind some of the stuff is going back, I just need to see what works...

Last week was a week of firsts when it comes to cars and driving. I did my "driving assessment" where they tested my cognitive abilities (took about 40 minutes) and then said, "okay now we will go drive". Here I was thinking that they would give me some instruction using the model of the hand controls in the office, but no, we just got in the car. The instructor said "push for breaks and pull to accelerate, if you have trouble remembering that just think "stop" [here she holds her arm out straight palm facing forward] and push your hand forward." So I drove around the Parkwood parking lots, then across to Victoria then out into the streets of London (there's a song in there). It was fine, I was very cautious, but I am sure I will get used to the hand controls with practice - which I won't be able to do for 6 to 8 weeks because ServiceOntario takes that long to process my temporary driver's licence. Very frustrating.

The other first was buying a car. A new car. We have never done that before, quite odd getting to pick colours and features, we are so used to getting whatever came with the car that we could afford. So we went to Stratford on Saturday and bought a Mazda 5. It is a 6-seater station wagon with sliding doors. We will get it modified to have hand controls and will take out one of the seats in the second row so that I can pull my chair in behind the driver's seat. The Mazda 5 is the car of choice of all the people I have met in wheelchairs. Both the pharmacist and the dietitian at Parkwood drive it and I have even seen it set up so that the robotic arm is not needed to bring the chair in. I have sold my small but mighty Rio5, which makes me sad, no more stick shift for me.

It snowed here on Saturday. Wheelchairs were designed for city living. So just like they are not meant for farms, they are not meant for snow. We went to the lighting of the lights in Blyth (where I had the honour of flicking the switch) and I got stuck on the sidewalk. I was all "I'm fine! I can do it!" but it was hard going, and I for sure would have been stuck were it not for my helpful kids and husband. Sunday seemed nice, but I got outside just to do the ramp four or five times before going back inside, the driveway was not an option. How am I going to get out in the snow this winter?

So lots is going on. Each week is packed. Doing therapy now takes way more time because I can't just roll down the hall and go down the elevator to the second floor. I have to get out of the house, transfer into a car, the driver has to figure out how to get my chair in, drive and do it in reverse. Nothing is quick and it is all quite exhausting. Some days are okay and some days are awful. Theo says I need to write more when the awful days happen. Today's awful thing is my feet. Although I don't have normal feeling in my feet - I can feel them because they feel like they are on fire. You know that feeling you have in your feet or hands when they have been really cold, and the feeling is just coming back? That is how I have felt all day. It seems to be a new type of nerve pain that I have, it has not been this bad for a while. Maybe it means something good? Here's hoping it does.


Sunday 8 November 2015

Love Story

Having been home for more than two weeks now I have heard Love Story on the piano (well the first part, anyway) a number of times that can't be counted. I have also said "Go get ready for bed" a lot.  I have not been out and about very much, but I have heard "You look great! How are you?" many times. Most  people that I see say this to me, and I have not quite figured out how to respond. What can I say? I guess I look good, for someone who was hit by a car, had a broken nose, two broken teeth and her forehead and chin split open. But those were just the things that were visible. I know that everyone knows that there was more to my injuries than that. And I know "how are you" is just what we say to be polite. But I still don't know what to say in return. I guess I'll figure it out eventually.

So how am I? Tired. I have gone from eating three meals a day in my bed to being up to eat with my family for every meal. I have been trying to improve my endurance (just being up out of bed) but some days I take it too far. Pacing is a word that keeps getting thrown at me. My pace used to be all go, all the time. Now, my head is constantly going, but my body can't keep up. I filled a whole page in my notebook today of things to do. I hung laundry on the line and rolled to the end of the driveway and back with my new FreeWheel attached to my chair. It helps lift my front casters off the ground, which makes wheeling easier, but it still is hard going on rough terrain.

The new hangout place in the house seems to be our bed. Now that we have moved all the books out of our room (thanks Dad) it feels more relaxed for me. Sometimes I work on the computer and do paperwork, or I rest and the kids read or draw. We have coloured together (thanks Steph), thumb-wrestled (Oliver's fav) and listened to music. It's nice to just hang out, but we also played catch outside today - fun for the kids and a bit of a core workout for me. I helped Ella make an apple crisp. Sounds simple, right? Seated at the table to peel, core and slice, but I have to press my arms against the table while I work just to keep my body upright. Tiring.

I started physiotherapy last week, it felt good to get back into working my body. Working with Bill and Mark will be great - using some of those new found muscles in different ways, feeling so much stronger than I did a month ago. I can now sit up on the edge of the PT bed holding myself up with my hands on my knees and pull in my lower back, without assistance. I also started doing some upper body exercises on my own today, just me, a stretchy band and the door handle. Now of course, my arms are super tired.

So, slowly, we are adjusting. The kids are helpful to me, and towards the running of the house. Lifting my legs up on to the bed, fetching things I can't get or reach and even helping me get dressed. I can do most things on my own, but it takes twice the time and energy as it does to get help. We would never get anywhere, let alone on time, if I didn't have help. Theo does everything for me (even more than the nurses did - sorry Lisa) and I am in awe of his compassion. I wonder how long it will be before he says do it yourself. Our OT said caregivers can run on adrenaline for as much as six months. I hope he kicks me in the butt before then or he will waste away to nothing. He says "you're still Julie", and that is what keeps him going. I guess that is our love story.

Friday 30 October 2015

There are no bells

For most of my life I have had structure provided for me. As a student there were bells to tell us when class was over. In university, classes were scheduled for us. Then I went back to school as a teacher and for 15 years now I have been ruled by the bells, my life scheduled for me. At Parkwood I had a schedule too, every morning it was put up on my whiteboard by my nurses - I didn't always like it (I believe I complained about being "put upon") but, it was structure.

I have been home for a week now. With no structure. Meals happen, bowel and bladder routines happen, the kids get on and off the bus each day and we try to get to bed by 10pm. There have been appointments, but not every day. And all of my well intentioned lists of "this is what I will do at home" mostly remain not crossed off. Sometimes I used to feel this way on summer holidays - so much to do, but life getting in the way of getting it done.

I want to do therapy. Exercise, stretch, get outside (therapy for my mind). At Parkwood it was easy to do therapy, it was organized and planned for me, I just had to show up. It was their job to make sure it happened. Now it's my job. My job to make sure that my muscles get stretched everyday so they don't shorten. My job to work on my core muscles so they can learn to turn on automatically, not just when I say contract. It's my job to stimulate my nerves and think toes move - so that one day it might happen. It was easy to work hard at Parkwood, I had people rooting for me and looking for improvements every day. At home, it's different.

It's not that Theo is not rooting for me, because he is. It's just that we have not established our new routine. He is on his old one, kids lunches and activities, laundry, chickens, getting the farm ready for winter. And me? I am desperate for my legs to come back, but this week I didn't have any drive. Goodness me - remember those mornings from my previous life? I would get up, be at the pool for 6, swim crazy hard then go to work, coach then go home to my family. Or get up on a Sunday, in the dark, join some friends and run for hours, just for fun! What happened to that motivated Julie? I want to find her.

A lot of people are telling me I am doing great, I look good, and I need to give myself a break. It's okay to rest. In my head, somewhere, I know that is true. But I am afraid. I made great gains with my therapy at Parkwood and I don't want to lose them. I have to be my own coach now and am not sure I will listen to myself. I don't have the tools - the plinth, the lokomat, the bike, the standing frame. The doctor says all of my gains will come by 12 -18 months. Tick tock. How can I make my body work the way that it was? And, there are no bells.


Thursday 22 October 2015

Home is where

We arrived home today in the evening light, trees and sky both glowing. Kitsy cat greeted us on the driveway, but ran as soon as my wheels appeared - she does not like them. I rolled up my new ramp - it is quiet lovely - through the new doorway and into the sunroom (still quite a mess of summer things, including my mountain bike and my wetsuit, stark reminders). The kids and Kathy did not even hear us pull up, things are so quiet in the country. There was a lot of "Mom! Look at this!" that took some time to get through, like the new bathroom sink, door and light switch and the roll-under in the kitchen sink. All very welcome and surprising additions to the modified/accommodated Tiny Farm house. Thanks Casey!

The drive was long and took a toll on me, exceeding my pain threshold. So I am in bed with extra covers and a magic bag. We had to make a couple of stops, one for Starbucks and one at Shoppers. Did you know that a box of 30 pre-lubricated catheters costs $165? Funny that just today one of the nurses was telling me about how they teach people to wash and reuse their catheters for a 24 hour period. Using 5-6 catheters in a day will sure add up, and washing is not an option for me at this stage of the game. I now have my 5th UTI. Tonight's cranberry juice was heated in a mug and delivered with a small bowl of chips by my wonderful daughter. If only I could just pee like everybody else.

Our new Sleep Country bed is set up, and even though the regional manager delivered the bed frame that was missed on the original order, the two XL twins are not the same height.  I am displeased. Theo is already taller than me by a mile, and now his bed is five inches above mine! Add it to the list, right Jane? This too shall pass. We will likely spend most of our day tomorrow getting this space organized. I need to be able to reach what I need when no one else is around and park my chair so I can get out of bed. Had a great surprize of some custom made and signed slider boards from my Madill Team - they will keep me moving - thanks Mark.

The kids are the same, which is good. Still being goofy, occasional tears and needing lots of direction. But being helpful too, both of them. Home. Bathroom is clean, laundry is on, dishes on the counter, furnace is humming, extension cords stretched across the floor (safety first!) and lots of food in the fridge. I hear that the office and the family room are full of random furniture, moved for renovation purposes (I haven't looked, I'll take Theo's word for it).

Kitsy cat even came in for a head scratch. It's nice to be home.

Tuesday 20 October 2015

This is where the rubber meets the road

"You must be excited to be going home" is almost the same as "are the kids excited for school to start". It really is the kind of thing that someone would say who has not really given it much thought, or they are just looking for something to say. Kids are NEVER excited to go back to school, who would be? Why would you ever want summer vacation to end? Leaving Parkwood is not the same as starting school, but the analogy of these statements fits. Think about it - this is going to be an emotional time, a new routine to establish and a major time of adjustment.

Don't get me wrong here, I am looking forward to going home and getting away from here. To the peace and quiet of our Tiny Farm, to be a family again and eat real food. But. And that is a big but, because things are not ending here, they are just beginning. This is where I will see if I can do what I have learned here at Parkwood. Sure, I have been "independent" as a patient for a while, but there was always a call-bell nearby, and a nurse or therapist to help me out. I could pull a curtain and shut out the world. This is where I will see if I am able to reduce the number of infections that I have to fight and patient enough with my bowel care to not have accidents. Can I force my body to get stronger and will I be able to wake up more motor activity? How am I going to be able to slow down my drive so I don't constantly overdo. Am I patient enough to ...survive?  Leaving Parkwood is not the end, this is just the beginning.

Some of my friends have said that they have not been able to help out as much as they would have liked to - my response is that this is a long road. We will need help. And we will be asking for it. We will need help with things that we don't even know we need help with. I can't walk, can't stand, can't move my legs except if I lift them with my arms! Everything at home and in life is going to be different. Until we get our feet on the ground (I say stupid shit like that all the time) and learn about our new life, we won't know what to ask for. Things I do know: we will need help with meals, help to get to appointments and get groceries, help with my therapy and time to just be "normal". Although I have come to realize that there is no such thing as normal anymore.

Here are some of the facts about my return home:
  1. I come home to TFB on Thursday afternoon, after PT and my wheelchair fitting. Theo is picking up me and all my stuff. 
  2. The house is ready enough. We will be making only minor changes until we know if we are moving or building a new house. This decision will not be made for some time (insurance and legal actions pending).
  3. Our bedroom is in the dining room, with a new bed being delivered tomorrow. 
  4. I hope to bring home a wheelchair that will have a front wheel that will attach to make it more "off road" capable. 
  5. We have purchased some equipment, and rented other pieces of equipment until we know what works. 
  6. I will not be driving with hand controls until I get assessed and trained (starts mid-November) and we buy a new car.
  7. I have decided to go to Parkwood for robotic therapy (FES bike and Lokomat) one day each week for 12 weeks.
  8. I have not decided where I will be doing therapy, otherwise. I need to talk to the prospects in person.
  9. We likely will hire a PSW and a house cleaner. 
  10. The ramp is done. 
  11. We have an appointment every day the first week I am at home. 
Are we ready? No. Do we have a choice but to manage? No. Lots of people have said to me "I would never have been able to do what you are doing - you are so strong". Although I try to take it as a complement, I don't believe them. If you were in my shoes, you would do the same. You would not give up, you would not give anything but your best. So now we will be doing that as a family, giving our best. That will be hard, we will not be at our best all the time, no one is.

This is where our new life begins. I am sorry that this has happened to Theo and my two wonderful children. But we will figure things out, one hurdle at a time. This is where the rubber meets the road.

Wednesday 14 October 2015

Like a rope around my chest

Eight days. And today is a beautiful day. On days like this I have been wondering,if I were teaching right now, what excuse would I have used to get my classes outside...

I have time for "recess" this morning so I am drinking coffee with my laptop out on the patio - while the kids from the daycare play on the other side of the yard. I took a chance coming down to the Tim Hortons; now that I am self-propelled I can't carry a coffee and move my chair at the same time. When I got downstairs I happened to run into Jean, my social worker, who graciously agreed to help carry my coffee outside for me. So know I have to consider whether or not to put my hat on, the plastic surgeon doc suggested I not let my scars get any sunlight - but it feels so good on my face.

So aside from a bit of pain in my back, I am feeling well today. I am hoping that the pain in my back (it's kind of new) is caused by the back rest of the chair that I am trialing right now. It is too high; it comes to the bottom of my shoulder blades. This afternoon I am supposed to be meeting with Cliff from Motion to hopefully try a different backrest. Right now I have the TiLite ZRA, which is supposed to be the best titanium chair out there. Being told to choose a wheelchair is like being give a bunch a of money and told you have three days to go and buy a car - except you have never even ridden in a car before, let alone know have to drive one. Not easy.

Doctors and spinal cord patients talk about "level of injury". My level of injury is T4. What happens for me and most other patients is like a really tight rope tied around my chest. That rope is right below my breasts, exactly on the line where my bra sits (T4). It is also in the same spot where my chest tubes were inserted during my stint at Victoria. I have never really had a good explanation about what causes the pain (that tight rope) but I imagine that all the nerves at that level just get cut off, so they kind of go haywire, sending out impulses all the time, but with no purpose. This is what they refer to as nerve pain.

So throughout most of the day I am distracted enough to be able to ignore the pain, pretend it is just the annoying elastic of my bra, but at the end of the day when the clothes come off it is there. Like a fire burning around my chest. Lately, in the past couple of weeks, and not every night, that fire seems to be entering my lungs. So I finally said something about it to my nurse a couple of nights ago. She checked my vitals, all good. She listened to my lungs, all clear, no crackles. She offered me a couple of tylenol, which I took, but it didn't really change. I went to bed and felt better in the morning. But later in the day that feeling came back. It is so hard to describe. It's not heartburn, it's not fluid in my lungs that I need to cough up. It feels like the rope is tighter, like there is pressure in my chest that gets worse with a deeper breath. Pressure increasing as the day goes on.

So when I told Lisa about it yesterday and she suggested it was anxiety, I was quiet doubtful. That is not the type of person that I am. But then I saw Stephanie who said the same thing - and explained why anxiety was a very plausible explanation. Then when I saw Kristen and she listened to my lungs and felt how well my chest expands for breath - she agreed. I started to believe, and to talk about it. Anxiety makes sense. Not that I am having a panic attack, but I have a major change coming up in eight days. There are very few things that I am able to plan for or have control over for this change - and that is not something I am used to. I am a teacher, I plan for a living. So this is going to be hard for me, not being able to be in control. But what I can control is how tight I let that rope get. Talking about it helps, so hopefully it won't get too tight today.


Brave face

This is from last week, Friday October 9th

Today I have not been able to find my brave face.  Most days I can.  I look at what needs to happen in order for me to be stronger and more independent, and I do it. I know that there are several reasons why that brave face won’t surface today.  Everyone here says that infections just make you feel like crap.  So that is reason #1.  My 3rd UTI and 4th round of antibiotics, so a UTI can only be ignored for so long and then antibiotics are a must. Prior to the invention of antibiotics, UTIs were the number one killer of para and quadriplegics. 

Not only does the infection make me feel awful all over, it also makes my leg spasms worse and my legs more uncooperative than usual.  It also makes me cry – and the tears come pretty much anytime someone talks to me.  Reason #2 might be me having to make a decision about a wheelchair and not knowing how. I am comparing apples to bananas here and I don’t  like it.  Retailer has not been helpful – hopefully that changes.

Also a big weekend for me is in store.  My whole family is coming for Thanksgiving, and it’s my birthday on Sunday.  I am afraid of not being able to keep up and do fun things which I want to do so badly.  I am also afraid of not being able to find my brave face even though I really want to, really badly.   So as I go to bed, I think that tomorrow will be better.  Those nasty bacteria will be stomped on by the antibiotics and things will seem clearer – I hope.

Monday 12 October 2015

Being Thankful

Today is Monday, Thanksgiving Day. I have just been through my Facebook feed, seeing all the pictures my friends have posted of all the things that they are thankful for; fall colours, carved turkeys, friends and family, running on the trails of Huron County. I have also read "my wall" and have seen all of the birthday wishes...which I am thankful for. I am also thankful for all the birthday wishes sent to my phone this weekend; so nice to hear from so many friends.

This afternoon I had a nap. It was the first time that I actually slept while taking a nap. I had woo bear over my eyes, a fresh set of earplugs and had Ella close the door on her way out today. And I slept. It took a while, but I know that I slept because it was someone knocking on the door that woke me up. I am not sure how long I slept for, but it felt good. You see, I was tired and I actually listened to my mother. I wasn't sure what I was going to do this afternoon after everyone went home, she suggested I rest, and honestly there was nothing else I could have done.

I was tired because I spent the weekend with my whole family. And they treated me like a queen. It was wonderful. You see, my mom had made this plan weeks (maybe months) ago, that we should all stay at the Best Western (across the road) for the long weekend. We booked rooms for everyone, including their (one) wheelchair accessible room, and everyone came. Dave brought Karla and the girls on Friday - what a long drive. Lara and Ant, Jane and Darryn and the kids came Saturday; Sue and Jim and a well timed hockey tournament brought Cam for the weekend too. Mom and Dad stayed for the duration and Mary and Bill came back and forth for meals, to hang out and to see Cam's hockey. Theo and the kids eventually arrived Saturday afternoon and everyone stayed until today.

The BW is more-or-less like a resort, but without the swim up bar - [I still managed to find a rye and ginger to have with my dinner - thanks Ant]. Dave and Karla had a King suite with a big table that we could eat breakfast at [thanks Mom] and Ella and Maia even had their own suite for a night [thanks Jane]. The girls loved it - staying up late to watch a movie "it was a horror movie, but it wasn't scary!". My siblings all took turns carrying me into and out of the pool (not at all accessible) which was lovely and I showed off some of my swimming tricks. I think that some were surprised that I was able to keep myself afloat. The kids love the pool there, Oliver has done the waterslide 96 times and Ella is still young enough to just play. I loved watching them have fun with their aunts, uncles and cousins - and even Gramps did a lap of the pool before retiring to the hot tub.

It was a packed weekend even just with visits, but I still managed to squeeze in some shopping, of course. Dave and I went to check out possible future vehicles (Honda H-RV and Subaru Impreza) and Theo, Mary and Bill and I went to find me a Lay-Z Boy. Well, Dave did not buy me a car, but we did find a chair which I hope can be ordered this week. The choice of vehicle will be a difficult one. I have to get a new car because both of ours are standard, not an option for me anymore. I want all-wheel drive, low enough for me to independently slide into and something that I will easily be able to get my chair into. All three seem to be a tall order - but the guy from Honda is calling me this week anyway :)

Ten days, and yes, I am counting. Theo and Casey are going to be busy this week...



Tuesday 6 October 2015

Just like a run around the block

Eight weeks in, today was a day of firsts in therapy.

At home last weekend I did not provide much help in the kitchen. Usually, I was politely asked to back my way out of the kitchen so they could prepare their own food, so I did and mine was brought to the table for me. Ella and I did make a nice pot of soup, but my work was at the kitchen table with the squash, far from the kitchen.

Today, I got to cook, in a real kitchen. One of the jobs of OT is to make sure that patients are prepared to go home and do the activities of daily living. So today I cooked lunch for Gary and I in the OT kitchen. It is pretty much a regular kitchen, but there are a few tools that I will need to get for home. I used a tray to carry things on my lap and there is no cupboard under the kitchen sink, just doors that open so I could roll my legs under and wash up. I made egg frittata with toast with eggs, shallots and a red pepper from our farm. Gary said he  doesn't usually make "fancy" eggs, so I taught him how to broil the top of the frittata until it was golden. It was nice, it made me feel productive. I wish I had taken a picture.

Speaking of pictures, check this out:
This is called the Lokomat - it is basically a really expensive treadmill that I am strapped to. It has a waist harness and four straps on each leg and foot. It is hard to tell from the video, it looks like I am walking on a regular treadmill,  but the lokomat is doing the walking for me. Kristen explained all the physiological benefits for using it, (like keeping my legs ready to walk, in the event that my motor control returns) but let's face it, it is just plain awesome. I am not sure if you will be able to hear the audio - but I am wanting them to crank it up so I can go for a run around the block - run Forrest, run!

Tomorrow I swim at 9 am and then Jane and I are off to Vic for my last (hopefully) follow up appointment.




Sunday 4 October 2015

The List

I like a good list, funny that I married a list guy too. But his lists are a bit different than mine. Before my accident, Theo made lists, but they were scattered around on random pieces of paper - backs of envelopes, coloured paper home from school, even on edges of the Globe & Mail Saturday crossword. Since then, however, he has changed his ways. He always had a little brown book that he wrote down special lists or funny things that the kids did or said, but that book is now his massive list book. Ever since July 29th he has been keeping notes, writing down questions and making lists. That book even contains my first "questions". I use quotations because my first questions were those that I was trying to ask after I came out of anesthetic and they were just mere scribbles on the page.

So after this crazy awful weekend of pain and disappointment I have a pretty big list of things to do and ask tomorrow. Theo forgot to bring his book with us tonight, so I will start with the things he is supposed to remember to do (hopefully I remember what they were...)

Theo:

  1. measure the width of the hallway upstairs
  2. send me the contact info for Adapt Able
  3. talk to Casey about the ramps
  4. describe to me your plans for the front wheels of a practical outdoor chair
Me:
  1. Call Adapt Able and give them my side of what I need in a house - Adapt Able is the company that comes and does an assessment of the house and makes a recommendation to the insurance company about how much should be spent and what should be done to renovate the house to allow me to live to my maximum living potential.  This will include me explaining that our bedroom will need to accommodate a king size bed. Don't think that this is me being grandiose with my living. What it will actually be will be two twin beds put together. Mine will have the head/foot raise/lower option and likely a bar on the outside. Between the beds (and thus the need for twins) will be a strap that I can grab to help me roll over when dressing. I will also tell her about the difference between a roll in shower and a tub bench - the tub bench does not allow me to wash my hair/body with two hands, I always have to hold on to the bench so I can keep my body up-right. 
  2. Talk to Gary about my wheelchair. I have made some inquires with people in the know, and they think my chair is too big. The tighter your chair is to your body the easier it is to maneuver. Also, we at Tiny Farm Blyth, do not live in the world of pavement and cement sidewalks. I just about died of spasms and back pain going down the driveway. This is not okay. My plan is to pick my kids up from the bus stop everyday, and I will not be putting myself through that on a daily basis. Since getting two chairs straight away is not very logical, I am going to ask for two sets of tires. I will wheel myself out to the sunroom, transfer to a chair, change the wheels to large knobby mountain bike wheels, transfer back to my chair and away I will go. That is the plan, we'll see what Gary says. 
  3. Try on my new MEC mail-ordered bathing suits. My suit (10 years old) still fits, but a racer back is murder to get out of when wet, so I have some other options. I wanted to try them on this weekend, but the energy needed escaped me. 
  4. Talk to my new OT about the equipment I will need at home, specifically the bed. I hope that by the time I am home the new bed will be there. We slept on the queen bed from the guest room which I think was my brother's when he was a teenager? I'll just say that it is a bit on the soft side and once I rolled into the middle there was no getting out. 
  5. Call my case manager about the mini-ramps that were dropped off last week at the house. The company had come to do measurements to install ramps inside the house anywhere there was a lip or drop (like into the family room). They dropped them off. That is all - no installation, didn't check to see if they fit and in one case all they did was one side of the lip, not both. Not acceptable in my mind. 
  6. My bonus list item is to figure out how to use iTunes on my Chromebook. I have some iTunes cards (from friends and even still from a staff meeting) and I have a fun new little iPod I would like to load up with music but am not sure where to start. 
  7. On top of all this, tomorrow is a shower morning, bowel and bladder care, OT, speech, PT and hopefully some time outside. 
Not a bad list for a Monday - the trick will be getting the calls in in between my therapies. We often play phone tag and I can't talk during therapy - that would be like taking a call in the middle of class - not very respectful of a teacher's time. 

It's all about time. Having time to reflect is something we don't put on our lists. I wish we did, because it is important to build it in. Theo and I did some reflecting on the way home tonight. Man, can you believe that I said that? What I mean is, on the way back to Parkwood. Here is what we came up with: The first time of many things is often hard, the first day at school, the first day of a new job, the first day in prison...just started "Orange is the new black". What made this first especially hard was that it should not have been hard, after all it was just going home. Home has not changed, it's me that has. And that is something that I can't seem to get my head wrapped around yet. 

The other thing that may have lead to my crash on Saturday was just holding on for so long. Holding on to get home, holding on to be in the peace and quiet, holding on to hold on to my kids and share a bed with Theo. I know that many times I have done the same thing while working - holding on and tricking my body to stay well. There is no time to phone in sick while teaching, so we tell ourselves to stay well - and then when the holiday or long weekend comes - there is the crash. 

I am sorry that my crash lead to so many tears, I wish I could have changed it. But I am glad it happened because now it is over. The first time is over. Now I know what to expect and what I really have to get ready for. I will keep working on getting stronger. Funny thing happened on the way home. We made a stop to pick up some dinner. Getting back into the Element (it is quiet an uphill slide) and once in the passenger seat, I said to Theo, "that was mostly you" meaning he basically pushed me up the slider board and into the car. What made it funny was that he was just about to say the same thing to me, meaning that I did all the work. So my upper body is getting stronger, and now I have evidence. A good thing for my scientific mind. Another funny thing, speaking of minds, is that in my brain testing I am doing just as poorly at the math as I ever had done before. How about that Boys of Science, that wack to my head added no new math skills. Too bad. 

Dystopia

Imagine that you were living on the International Space Station for several years. Your time away causes you to long for your family, friends and life back on Earth, but you pour all your energy into your scientific experiments and on keeping the station running.  When your time is finally over on the ISS, you are ready, excited to return to the way your life used to be. Now also imagine that while you were away you forgot completely about gravity? You come out of the landing ship unable to walk, can't find the muscles that you know you used to have and can't do the things that you used to do - even though your home has not changed. The children you love are still smiling from the other side of the table, the kitchen still in a comforting state of disarray and your loving husband still warm in bed beside you. But this thing called gravity it is preventing you from doing all those things you used to be able to do.

So this is why my weekend home, by utopia, has turned into dystopia. I have been living on the ISS, pouring all my efforts into therapy and healing, where laundry is done, food is delivered on a tray and there are at least eight different (highly trained) people continuously available to assist me at any given moment. So when I returned home, to the place where I (usually) enjoyed doing all of those daily living activities like cooking, cleaning, laundry, playing, and can not do them, I start to give in. All my work on the ISS, what was the point? I wonder how I will ever be able to overcome this (gravity) and participate in life again? My wonderful children seem to understand and are helpful as much as they can be, and my most patient and caring (untrained, but quick study) husband goes above and beyond to help. But when all I want to do is get up off my chair and walk over to the couch to be beside the warm wood stove, and can't, the reality of my situation sinks in evermore. In my life before going to the ISS I used to be able to get up and move to wherever I wanted to. Now I can't.

I can't get up stairs to say goodnight to my kids in their beds, I can't reach the kitchen sink, dishes or oven controls. In fact if I am in the kitchen anyone else who dares to join me does so at the risk of losing their toes. I can reach the microwave, but can't hold a bowl of oatmeal or a cup of coffee and roll my chair at the same time. In fact the slope of my legs makes it impossible to carry anything without the risk of it landing on the floor.  I can get into the bathroom, but can't reach the light. I can get into the office, but the carpeting makes for a difficult turning radius. Ella and I attempted to get out to the garden only to get caught in a hole in the lawn that even Theo had to turn my chair around in order to extract my tires.

I have had an extraordinary amount of pain in my back this weekend. I am unsure if it is the result of the long drive home Friday or the softness of the mattress we are sleeping on. I have taken more pain pills then usual and even lay on the floor on a sheepskin in front of the fire to try to ease this discomfort. That of course presented the problem of gravity again - requiring the brute strength of Theo to get me back up and into my wheelchair.

Ella and I are going to make butternut squash soup for lunch today, something that I would have done with voluntary assistance in the past, now I will be doing it with supervision. Maybe I'll be helping by chopping onions at the kitchen table, or pealing some apples and pears. I know that we will adjust, and make some changes to the house to make things a little more manageable. In the mean time my frustration level, sadness and longing for how things used to be is unbearably overwhelming.


Friday 2 October 2015

Fast Friends

This is me with my new friend Dave in front of the nurses station in 4A East.

Now watch this:Murder Ball.

So now you know what Murder Ball is and who my new friend is: Dave Willsie - Team Canada Wheelchair Rugby - 2015 ParaPan Am Games Gold medalist. And that is the gold medal in my hand! 

Dave came to see me this week on Tuesday; Joanne (charge nurse) came into my room in the morning and said that I had a visitor. Dave rolls in and says "so, you are the famous Julie". Apparently people have been talking about me? I had seen Dave's pictures in the hallway here as the "Parkwood Boys" with their medals, but didn't recognize him. Dave is a quadriplegic, and has been for 20 years. He has travelled the world with his rugby team winning both Olympic and ParaPan Am Games medals. 

Dave is my new fast friend. We just clicked - started talking about everything. There is some kind of invisible barrier that just melts away and everything is on the table for discussion. He was "checking out" my chair (his words, not mine) and I now know a lot about what I should be looking for. He told me about how he learned to live as a quad from all the guys on his rugby team - while travelling! The functions (or lack thereof) in a paralyzed body are unique and complicated and newbies like me like to gather as much information as possible. Dave lives in his own house and runs a business with his brothers, all while traveling the his team. Next week they are on their way to England. He is such and inspiration to me - gave me a huge boost of confidence. Thanks Dave.

While he was here he hopped out of his chair to show me his seat cushion. Right from his wheelchair into the visitor chair - no slider board - and it happened so fast I almost didn't realize he was doing it. Later, I was thinking about how easy he made it look, and then I thought well of course, he has been in a wheelchair for 20 years. I need to cut myself some slack - I am only two months in, but my slider board transfers are getting pretty slick...

Next Friday my Rec Therapist and I are going to go and check out the Para Swimming at the pool here in London. Very exciting!

I know, I know, pace yourself, Julie. 

Thursday 1 October 2015

Staycation

For the first time in two months, Theo and the kids will be staying home for the weekend. They will not be doing the 1.5-2 hr drive down the pokey highway all the way through the city to see me. Instead, I am going home. That's right, I will be doing that trip in the opposite direction, Theo is coming to get me, and all my paraphernalia, and I get to spend the weekend in my own home!

I have told a few people this, and their first question is "what about the house?" which really means - what state is it in, has it been renovated, how will you manage? The short answer is that nothing is different, we have made no major changes. The long answer is that we are borrowing equipment from Parkwood to make it work: a ramp, a commode, a tub bench and of course my loaner "carbon lite" manual wheelchair. Our bedroom is now in the dining room and the table in the family room. The doors are wide enough, although not ideal, as I will have to watch out for my knuckles.

And we are just going to see how it goes.

Next week is my "discharge planning meeting" where the Parkwood Yellow team and my Rehab First team will get together and outline the plans for when I leave this place on October 22nd. I know a big part of that planning will be about how I will manage at home, and (as you know) I will want to have something to say about it. How can I contribute meaningfully if I have not given it a try for myself? So here we go - to give it a try.

This is going to be a very emotional and exhausting weekend for me. Theo is concerned about how being home, and seeing all the things that I used to do while standing on two legs, is going to affect me. I know it will, and I know that I will cry, likely a lot. But I am ready. I have been waiting for this time for far too long. Time to be with my kids, listen to them tell me all of their 9 and 12 year old ideas and thoughts. It will also be time to be in the quiet of the our lovely country 10 acres. Time to sit with Theo and share ideas and make plans. Just us four.

So wish us well, I know you all do - and when the time comes that I am home for good and rested and ready, we will welcome you to a big thank you bash - because we are so thankful.

Saturday 26 September 2015

Bliss

Not very often am I at a loss for words. And maybe by the time I finish writing I will remember the word that I am looking for. You see, the word roamed around my head on Friday afternoon after I returned to my room, 150 4A East, because I had been away from this place. For 24 hours Theo and I had use of the ILU, the Independent Living Unit, here at Parkwood. The space was designed to be wheelchair accessible, where patients and their loved one(s) could come and stay and try out their new way of living. There are lots of great reasons to use this little apartment: you don't have to go far, it's free, it's accessible, and you can call a nurse if you need one.

Sidebar - "little apartment" is quite literal, Theo felt like a giant, able to see on top of all of the high cupboards and bent in half to do dishes over the sink. I, however, was able to reach things and sit at a counter that was the proper height for my wheelchair. I choose not to do dishes :) In order to make our trial run more authentic we decided that I should be in a manual chair, so I parked my power chair and rolled myself to the ILU. By the end of our 24 hours I was exhausted from pushing my own chair, especially because it weighs a tonne and the wheels don't roll straight (a rental) - and I have had a power chair for the past month...it's made me soft.

I went into this 24 hour "get away" with a lot of stuff running through my mind. It was a first date (but without the movie (Forrest Gump)), except this was one with a lot of baggage. For almost two months we have been living apart, trying to figure out how to deal with our new reality, talking on the phone, texting, visiting in my not-very-private space, usually with the kids. I actually was a bit anxious about it all, wondering what we would talk about, and how things would work out.

Of course I need not have been worried, it was great. We had leftovers for dinner (a completely normal thing for us), we talked while we ate, we lounged and we reconnected. It was exactly what we needed. To prove to ourselves that we were okay, and that we would be okay. I am broken, we are not. In the morning we listened to CBC while we ate oatmeal (also completely normal). We managed all my care, my medications and even a shower without incident and no need to call for help. It confirmed in my mind that I am ready to go home and it established for Theo that the idea was possible and practical. In 26 days I will be discharged - but I hope to get home for a weekend before that. What better way to work out the bugs but to try it out first, just for a short time? So we will - hopefully next weekend - stay tuned.


That word? Still can't find it. But it had something to do with the peacefulness of our time together. We settled into our comfortable rhythm without the constant drone of patients, nurses, bells and televisions to interfer. It was bliss, but I didn't realize how blissful it was until it was gone. I was back in my room, with the people and the bells and it seemed to be a thousand times louder than ever before. And Theo was gone, which made me sad. But I was comforted by the time that we had together and knew that soon it will not just be for 24 hours.


Finally took the plastic cover off my webcam on my chromebook! I have a new haircut and colour that I love and you can see my room in the background.

Tonight I wrote while so many friend were at the concert in Lucknow. Thank you Natalie Irwin and all the others that made it happen. I wish I could have been there, I love you all for what you did to put it together and for all your wonderful music. You always made me cry at assemblies...you had the same effect on me tonight - I heard some of it live and can't wait to see the recording.

Wednesday 23 September 2015

Something like normal

Second time in the pool today, felt way more like normal. We tried having me swim laps, but in a ten meter pool you can not get any momentum, as a consequence my legs drag. So Kristin was holding my feet to keep my legs up, and with that it was almost like normal. I will have to work on what will hold my feet up when I get back to the Wingham pool, and who knows what a paraplegic flip turn will look like. I guess I have some research to do.

Tuesday 22 September 2015

No Compliments

I have been wanting to write this post for a while now, like since my second week here at Parkwood. Physiotherapy - the place where change happens. A few of my closest friends and most of my family have been here to witness my physiotherapy, and now anyone who has read the Blyth Citizen has seen the setting, but there is a lot happening there that I have not written about. And being that I want this blog not only to record my recovery but also to share it, it is now time to tell you what is going on in that PT gym.

Kristin and Barry are my PT and PTA. I have said it before, they are wonderful. Wonderful because they know their stuff, they work my body and they challenge my mind. Those of you who train with me (as a coach, boot camper or as a fellow TriHard) know that I like to push and be pushed. I can challenge myself when I feel up to it, but most of the time I feed off of the energy of others. That is what has made PT challenging. I have no one to compare my speed/strength/endurance to. It's just me. Sure there are others there, but everyone is different, older, younger, with a different injury level or health complication. There is no comparison. So for me, it's hard. Yes, I am making improvements, but they are so infinitesimally small I barely notice them.

So that is where no complements comes into play. In some circumstance I suppose I have been fishing for them, but at the same time I am not. Because often I don't think that I deserve them. Surely rolling from my back to my side is not that big a deal? Any able bodied person would not think for a second that it was. And what makes it all the worse is not being allowed to use any of the "tools" around you. I am not allowed to use the edge of the bed or the "headboards" that are one inch metal mesh that are perfect for getting your fingers into (think fifty shades of grey). Kristin says in any other circumstance I can use what is around me to help me, but not in PT. I can only use my body.  But when you have one core muscle and your legs do not follow instructions...it becomes a big deal. So does lifting your legs up onto a bed, legs that weigh 300 lbs each. Try taking off your shoes without moving any of your lower body parts. Go ahead, try it!

In PT complements are not handed out willy-nilly, no sir. You have to earn them, otherwise they become meaningless. That "good job" that we all give out for something that required no effort at all has become meaningless. So I have to work hard to get a compliment. Kristin is a bit quicker to give one out in comparison to Barry, but when I get a high-five from Barry I know that I have earned it. One day I got two! He also told me that he has never worked shoes with someone in their second week of rehab. Nice. So after being in the pool last week I have earned a new name. One-ten. As in 110%. In the pool I was rolling front-to-front making sure to come back to full floating position. Barry challenged me do it in both directions, one after the other returning to floating position each time. So, of course, I did.

I don't feel like I am always giving 110% but I try. And now that I only have five and a half weeks left, I have to try harder. So watch out Barry, one-ten will be back in the gym tomorrow, and in the pool on Wednesday. Giving all that she can so she can be back with her athletes, boot-camp friends and TriHards. And that can not come soon enough.

P.S. Two of my favourite people in the world sent me this song on the same day. I want to share it with you. Fight Song

Last week the kids came to help me with my PT. Here they are throwing a ball to me and I am supposed to be catching it without using my hands to keep myself upright. Total core work. Hard stuff.


Monday 21 September 2015

Not My Job

I don't like the way today started. Last night I was looking forward to Monday. A new week, a day of therapy, friends coming in the afternoon. And here it is, 10:35 before I am ready to start my day. I may come back later and re-write this post, but maybe not.

I know that I need to speak up for myself and make sure that if someone is doing something wrong with my care - so that wrong thing doesn't happen. But I don't think it is my job to "train" someone new. Let me try to put this into the context of teaching. If a new teacher came along, and she told the kids she was new, and was not sure how things were done in "this classroom" then what would the kids do? And what about if one kid said, "oh, we don't do that anymore", should that teacher believe him? Well, I think we can all assume that chaos would reign.

So this is just a bit of a rant, because I am not happy with my care this morning. It's about being left in the bathroom for an extra 15 minutes (let's face it, I am already in there way longer than I want to be), missing an appointment (leaning to get dressed while sitting) because my care did not start early enough, and missing my outdoor time (i.e. recess) before OT. All because the new girl did not have her shit together.

I know that we all have off days, but professionals need to be professional at all times, as much as possible. When you are making a first impression (i.e. the first day of school or the first day with a patient) you want to send the right message - that I am competent and will do my job well. It is not a student's job to tell a teacher what to do, nor should it be a patient's job to tell a nurse what to do. But, having been through this experience, I am reminded that I do need to speak up at all circumstances where my inside voice says "say something". That is my job, because no one will look after me the way I want to unless I do speak up.

So now that I have vented, I am going to re-start my day. In 10 minutes I will be starting my "seating assessment" where we will be deciding what kind of wheelchair I will be getting. I am excited about that because it means that we are that much closer to getting me home. I am going to go upstairs after OT and get my lunch and come back down to get more sunshine, except on my forehead, because that is what I need the most.

P.S. The nurse did apologize by offering a semi-reasonable explanation. But first impressions really stick.

Sunday 20 September 2015

No longer natural

I am struggling to understand how something can be wonderful and awful at the same time. Wednesday, for physiotherapy, I finally got to go in the pool. It's a therapy pool, so small and quite warm, but it is a pool none the less. I have been scheming since I got here to be able to go in, and was told that I had to wait until my brace came off. So last week, once the brace was "weaned" Kristin and Barry agreed that it was time and they booked my one hour session to be in the pool.

The PT pool is well equipped with a lift for getting in and out of the pool, both with a chair and a stretcher. Prior to going in the pool I told many people that I would not need a lift, that all they would need to do was put me on the edge of the pool and I would just roll in. Well, I was wrong. That would be an incredibly unsafe thing for me to do. Not being able to feel what my legs and back are touching could lead to danger - skin abrasions, bruises, cuts - and I would not even know that they had happened until much later. So rolling in is not an option.

I don't know how to explain what being in the pool felt like. When I first got in, Kristin wanted to put noodles and belts under me to keep me afloat, but it all felt wrong. I felt like a toddler whose parent was trying to put on an outfit that they did not want to wear. It just did not feel right. So I made her stop and just let me see how it was to be in the water on my own. I discovered that I had no centre of gravity, not like I used to. I was a swimmer - some say the fastest woman in the pool - as a kid I learned synchronized swimming, was on the swim team, and most recently was an olympic distance triathlete. So, throw me in the water and I always came out on top, it was my second nature.

Now I need to give myself some time, time to adjust to this feeling, that seems so unnatural and not right. I was able to log-roll from front back to my front in both directions. My syncro-arms came back to me. With sculling hands I could travel down the pool on my back and then they let go of me long enough to try my back crawl - which was slow, but worked. But my legs, my legs just sort of drag out behind me, of no help at all. My wish, that being in the water would just wake up those nerves responsible for making them kick, did not come true. Not last week anyway. So I will keep trying to wake up my legs and strengthen my core to keep me stable in the pool (and everywhere else). Then I will work on figuring out how to make being in the water natural again.







Wednesday 16 September 2015

Hands

I can't count as high as the number of hands that have helped me since all of this started. The first and most significant are the ones that saved my life. When I arrived here in London at Victoria Hospital my level of response had dropped drastically and the surgeons needed to take fast action. The hands of the spinal surgeons repaired my vertebrae and spinal cord. The plastic surgeons stitched up my face and chin, pulling skin back together to hide my exposed skull. All this while the anesthetist kept me alive.

And then there are the nurses. All women with the exception of one. Sidebar: when only one man has been privy to my lady parts for the past 21 years, it took a bit of adjustment to be comfortable with that - but he was wonderful and taught me the importance of being an advocate for myself. The nurses have a tough job, they mostly deal with bowels, bladder and skin here all day, every day - none of which are pretty sights. But they continue to be wonderful - which is good because I am helpless without them. The design of the rooms here at Parkwood were meant for long term care, not for people with paralysis. So consequently I can not reach anything with my own hands. Most frustrating. "Use your grabber" is a common phrase, but you can only use your grabber when your grabber is within reach!

That hands that help me in therapy are amazing. Kristin uses her hands (and her whole body) to stretch my legs - muscles in paralyzed legs that do not get stretched can shorten - and then what good would they be for walking? She and Barry use their hands to help me learn to sit up with proper posture, making me feel what it is supposed to be like. And it's weird, because I can't tell if it is me, or them that is doing the work because I can't feel their hands. When I can't take any more Barry is my backrest, his hands (and body) providing comfort during a time of exhaustion. In OT, Gary has magic hands. He supports my arms in the exact right position for the muscles I am working, and he finds the pressure points in my back, neck and shoulders that release the pain and tension that is holding me back. When Kristin and Gary find those spots they always ask "is that okay". My usual response is "no and yes". It hurts, a lot, but if you just give it that extra moment or two, it is always worth the pain.

Although I said the surgeons hands were most significant, the most important hands are those of my family. While I was in critical care, and then beyond, I had a hand to hold 23 hours a day. Only during the nursing shift change were they made to leave. Theo, Lara, David and Jane rotated through being in the chair at my bedside along with my parents. They slept in the tiny room with the tiny couch, and gave each other some rest every few hours. Even more than the oxygen I was receiving, those hands I held were my life line.

Friday 11 September 2015

One Good Thing

Today was not the best of days. Mostly because it was a bad night, but I don't want to go into the details of that. I am frustrated, angry and disappointed. My nurse Lisa put a fine point on it this morning. She was astute to recognize that I often wear a brave face around here, not showing what is really going on in my head (and heart). She wondered if depression was starting to rear it's ugly head. But I don't think so. I don't always feel the anger, even though it is just below the surface. I would be better off (and I try) to channel the anger. Into something positive. That used to mean doing something like going for a run. But what is my run now?

It is going to be some time before I realize that everything just takes way more time then I think it should. Prime example: dressing. I had my OTA Kelly give me dressing tips this morning, so including rest time and shoes it took 20 minutes. 20 minutes! To get dressed? Yup. My nurse Nicole says I will get much more efficient, but working part-time next year is looking like the most likely outcome of this whole fiasco. I would otherwise not make it before first bell. Eating takes longer too, just because of the awkward angle that I sit at in my bed. Once I get into my own custom wheelchair I expect that will change.

I get also frustrated by the seemingly mixed messages. Like: You need to eat more fibre, maybe you are eating too much fiber, you need a stool softener, maybe that was too much stool softener... And then there is water, need to drink more, need to drink less, especially in the evening, it may be causing the puffiness in your feet... It is a fine balance, and one that seems to not be achievable, I hope to come close, but I do not think it will ever be mastered. My body is not my body. I was a fine tuned machine (for a 41 year old who works full time and has a family). But now my body is a stranger, an alien that does not follow the rules that were laid out by evolution. One that needs drugs to run "properly" and deal with pain.

My Mom's friend Andrea says the best way to deal with crappy days is to find one good thing, and focus on that to get to the end of the day. Here is one: I started my cognitive testing today. It feels like being in grade 3 all over again, the "gifted" test. I find it very interesting because this is the same test that is used in schools to assess our students, the very same test that my own children took. I was pleased with my results from today, apparently I answered two questions correctly that no one ever gets right. I guess my giftedness, at least some of it, is still up there in my head. Thank goodness.

Another good thing happened today, and I cry as I write because it just goes to show how much Theo loves me. He found my wibbly woo bear. This is Ella's small pink fleece blanket with a bear head and arms sewn to it. She is letting me have it for company while I am away from home and I have been sleeping with woo bear over my eyes every night to block out the lights of this strange room. Well I was, until last Sunday when she got swept away with the bedding laundry all the way to London Health Laundry Services. LHLS does all the laundry for all the hospitals around - even Wingham. So you can imagine how many lost items they get. Well Theo made a miracle happen, and he picked up woo bear this morning and brought her back. So tonight I get to sleep a little better. And I guess that makes two good things.

It's Not Just Bikes and Cars

I wish I could say that I was a model citizen when it comes to driving. When I turned 16 and got my 365 my Dad took me to a yet-to-be-built subdivision and said "okay, drive". So I did, and he taught me to do it safely. But I was not a perfect driver. A while back my at my women's group, our meeting opener was "what is your worst driving habit". I don't remember too many of them except for one friend who admitted to driving while pulling out her grey hairs (which she has stopped doing for fear of having no hair left). I admitted to eating my breakfast (bowl of oatmeal or granola) in the car on the way to work. I am pretty sure that at that meeting I said I would stop, but I didn't. There were no oatmeal driving incidents, but that doesn't mean there could not have been. I am pretty sure eating breakfast would lead to a distracted driving charge.

Theo and I have heard from many people who have told us that they have changed how they drive. Giving a wide berth to cyclists and slowing down when it is not safe to pass. Even a self-proclaimed "redneck driving" friend of ours says he has changed how he drives around cyclists. This is Huron County folks, that is big. But it is not big enough, because even people who do know my story have not changed or "make exceptions".

Here is an example. A couple of weeks ago Theo arrived to visit me one evening and he was seething. Now this is a man who is tough to ruffle, so this, of course was quite shocking. He described a distracted driver who was on the phone behind him, driving way too close for comfort. Those of you who live in the area will know that Hwy #4 is stop-and-go with lots of bridge construction. At each bridge there is a stoplight to allow for one-way traffic over the bridge. Theo took a red-light opportunity to get out of his car and go talk to this lady who was behind him. She made many excuses for herself even after he explained that he was on his way to see his wife who was paralyzed after being hit by a car. While he was walking away, she said she knew my story, and that she was sorry. After the bridge she pulled off the road, we assume to finish her conversation and we hope, to think about her driving decisions.

Over the past couple of years at Madill we have been inundated with the idea that we choose our behaviour. And the same applies here. Choice. Make a decision to drive with care, care for the passengers in your car, the people who are taking advantage of the five months of good riding conditions the people whose life requires a horse for transportation. For me, Share the road is not just about bikes vs cars. I know I am up on my soap box here. I originally said this in my interview on Ontario Morning but I think it needs to be said again. And again. Remember that Vidal Sassoon commercial? I'll tell two friends, and you tell two friends, and so on, and so on...We need to share the road with everyone. Not just bikes, but with tractors, pedestrians, horse and buggies, and each other.

So when the province introduced new bike safety laws I thought they were good, a step in the right direction, but it is not enough. Because it's not just bikes and cars.

Wednesday 9 September 2015

Ready to Go Home

I am exhausted. What seem like just a few little things, have added up to be a tiring, but accomplished day. Now that I am healed and my brace is off, I am able to do more with my body. It started yesterday in PT. Kristen helped me reach forward while sitting straight-legged on the plinth, and from there I was able to touch and reach past my toes. That felt amazing. I have always been fairly flexible and that has been and will continue to be to my benefit through this recovery and into my new life. Boy, if there is one thing I have learned (and I said this to my fit friends Nancy and Karri-Anne who visited yesterday) being fit and flexible is so important because you never know when you are going to need it.

That increase in flexibility and my new found freedom to reach my toes lead to my curiosity about dressing myself this morning. And so I did. Underwear, leggings, bra, t-shirt, socks AND shoes. I have been doing my "uppers" for a while, but was not able to sit in a position to do my "lowers". I surprised my nurse and the folks down in OT when I told them, but Kelly is still going to come up and give me some pointers and short-cuts, because I was exhausted by the time I was done.

Remember how I said that they often surprize me in the morning and add something to my schedule? Well that happened again today, "Speech" was added - but I quickly learned that the plan is to assess my cognitive abilities to determine if my brain is still the way it used to be. I already know that my word recall speed is not the same and my reading eyes are different, so I am curious to know the outcome. The testing will help me make decisions about returning to work and any help that I may need in the future. Connie was interested in the fact that I was blogging, apparently that is a good sign. :)

After meeting with Connie I went straight to PT where Theo met us so we could try out transferring from chair to car! Now, he was supposed to bring the Kia, but he forgot and got distracted by the need to drive a clean car for Laura whom he brought with him this morning. Apparently living in a car leads it to not being clean enough for company? So anyway, before going outside there was some serious debate about whether or not this would work, as the Element is so much taller. All the worry was for naught - we did it anyway. It certainly was an uphill battle, and there are a lot of dangers to look out for, but I (we - thanks to Barry and Kristen) did it! I think that there will be dangers no matter what car - all those knobs and bits of metal that are inside the car door frame pose serious danger to my back as I can't feel it if I scrape along them as I get into the car. Safety first.

Even though I just wanted Theo to drive away with me in the car, we went back inside to the elevation table. I got all the way up to 65 degrees which is the highest they go! Yahoo! Now Kristen said I have to do it several more times to prove that my bp can handle it, that it wasn't a fluke. You see the whole time I was on the tilt table Theo was telling me about the home assessment that happened yesterday, and about all the changes that would need to be made for me to come home - even for a weekend. So, Kristen's theory is that Theo's talk was what kept my bp up, perhaps I was a bit worked up...I guess we will see.

To top off my day I learned how to do my own catheter. The nurses were all right - I am easy. So when all is said and done, I am ready. I can get dressed, get into and out of a car and pee on my own. What else is there? I am ready to go home. I wish it was that easy.

Sunday 6 September 2015

How are the Kids?

Yesterday I had a morning visit from my friend Shannon and spent the afternoon with Theo and the kids, and it was great. The kids scootered on the paths out back, we raced (I really thought my wheelchair was faster than it is), we ate from my giant bin of food in the fridge and just enjoyed the day. Everyone helped me do some of my physio homework and the kids got a kick out of how floppy I am (read: laughing hysterically). I wish home was closer and they could come more often, and not just for me. Their laughing, smiling faces bring happiness to others that are here. Children are therapeutic. My old neighbour in bed B says she will always remember the time she watched Oliver crawl right up into my bed and snuggle right in beside me, pure happiness.

Just before they left to get subs to eat in the car on the way home, Oliver said to me that I was lucky. "Oh, why is that?" His response, "You get to lay in bed all day." Which of course made me cry, and I feel awful about that. Awful. Because he was just being a nine year old boy. Then he wished I could trade places with him - which just made me feel sick because of course I imagined that it was him lying in this bed. To which I responded NO WAY. He doesn't get it - he's not there yet, and that is okay, because he is nine. In his mind, lying in bed all day would mean that he would be able to spend even more time memorizing his pokemon cards.

While we were racing, Ella asked me if being in an electric wheelchair was fun. And of course I can't just say yes to her. Instead I said, "if I didn't have to be in one, I probably would be." I don't know why I can't just think like a kid and not take everything so seriously. It's hard.

So "how are the kids" is a pretty common question these days. My response is that they are fine because I don't really know, and I think that they are. Ella understands, I think, but Oliver is not there yet. I am missing Ella's experimentation with make-up phase and Oliver's joy of having new back to school shoes. Things will be different when Mom comes home in a wheelchair, then we'll see how the kids are.
This was the location of the race - behind the dumpsters where are the old hosptial beds go to die.