Saturday, 22 April 2017

The Power of the Beat

I have a new muscle. I found it it a funny way, so here's the story.

I was laying on my bed in the hotel Elaine and I stayed at last week in Toronto. I was speaking at the Ontario Bike Summit as the closing speaker. I went thinking that I knew what I was going to say but then I got a better sense of who I would be speaking to and decided to take it in a different direction. I ended up speaking about being a Changemaker, encouraging all who were there to go home feeling energized about making their communities more bike friendly. I was a bit worked up about how it would all go until Theo talked me down - I realized that I was really just telling my story and I didn't need to make too many notes about it. It was well received and I was pleased with the outcome. I enjoyed myself.

I was working on what I was going to say, laying prone (physio speak for laying on my front) on the comfy hotel bed. I had Fight Song in my head, it just gets stuck there. So as I was thinking, I was also singing this song and realized that I was moving to the beat. I was moving my butt to the beat. Or at least I thought I was, I could feel that I was contracting it (just the left side) and I could feel it with my hand, at least I thought I could. Maybe it was just my head thinking that I was feeling it? So I asked Elaine to feel for it - she said she could feel my heart beating - and then I stopped contracting it and the "heart beat" went away. Then we did a little cheer. It was working. Gluteus medius? Yesterday I confirmed it with Mark - it's working, ever so slightly, but it's working.

That's what keeps me going. Knowing that the work I am doing, and all the people that are helping me, it's working. My body is relearning how to work. Even if that muscle is just barely moving, there is a message getting there and that is the first step. All the people who told me that my body would "max out" at 18 months? Well, I am past that point and it just goes to show that you have to keep going. You have to Be Brave.

Saturday, 8 April 2017

Balls in the air

As I work away on my little chromebook (yes, product placement, I love this thing) I have my email, calendar, blog and facebook open. Big mistake. All those things you have heard about reduced productivity because of social media and constantly being connected - they are all so very, very, very true. I keep a notebook that is really one massive list that I just make longer as I check things off, but if I didn't have it I would have no idea what I was supposed to do next. An email will ping and I'll go to it, or I'll end up on the phone to resolve something and forget what it was that I was working on. One day Oliver saw how many tabs I had open and said "Mom, you have to close some of those, that's too many!!" I am learning to pick one task at a time, but it's just so darn hard...

I asked my Mom to sit down at the table with me the other day (a hard thing to get her to do, sit down that is) so I could show her what I have been up to lately. My Inbox was open and I walked her through all the different subjects, giving her a brief explanation of what each one was about. My 25 balls in the air. I think she was sufficiently impressed because she suggested I write about it - "not everyone knows what you are doing". So, here goes.

By far my most exciting project is our new house. We are still planning and working with the architects, but at the same time we are working on permits, so we are getting closer! We hope to start the dig in May. This sketch shows a preliminary drawing. It is going to be slab on grade (no basement), four bedrooms and lots of room for my exercise equipment. The best part will be all the windows - south facing to collect the heat and light from the sun.

Everywhere I go (especially new places) I do a little assessment of their facilities - looking at parking, do they have buttons on their doors and most importantly, what is the bathroom like. When I think that they are not living up to standards I let them know. Doing this at a local McDonald's lead me to a most satisfying consulting meeting with the owner who was willing to make changes ASAP. When I followed up the week later, he had already met with his contractor! Thus far, my experience has been that people don't know what they need to do or that they need to do anything at all. BUT but when informed (in a nice way) what they could do to make things easier, they are most agreeable.

I have joined a couple of committees that are working toward making this community more accessible. The first is the Huron County Accessibility Advisory Committee that meets every few months. Our job is to advise those businesses or community groups who seek advice and to plan events. The second one is a group of volunteers who are working to make the Huron County 2017 IPM accessible. This is quite the challenge - making a 100 acre plowing match easy to get around! I also plan to be a part of shaping Huron County's cycling strategy and implementing more Share the Road initiatives in our area.
I am glad to be still "teaching" and got a chance to be in a real classroom last week thanks to my friend Heather. All throughout this year she has been talking to her class about me and my progress. A few weeks back she said they were keen to meet me and wondered if I would come speak to them. Of course I would never turn that opportunity down and it was FABULOUS. Now I don't have a lot of experience with grade 6s, but these guys (two full classes) were the most attentive, polite and engaged young kids I have seen. In fact, we ran out of time and I suggested that we follow up with a google doc where they could ask me more questions that we didn't get to. So that is on my list...

A while back I inquired to the Rick Hansen Foundation about the Ambassador Program. The Ambassadors are persons with a physical disability or have a seeing or hearing impairment. They speak to schools and community groups, sharing their story and in order to raise awareness about living with a disability and the barriers that exist in our society. I had an interview last week (funny, second "job" interview I have had since all this started) and I am now the newest member of the Rick Hansen Ambassador team. After I have some training I will be able to speak to schools, community groups and they have just started reaching out to corporations (which I am actually pretty excited about). So maybe my first official Ambassador speaking will be at Madill? Next week I will be speaking at the Share the Road Bike Summit in Toronto. I am not there as a Rick Hansen Ambassador, but instead to encourage changes for cycling safety and bike friendly communities. I am looking forward to this - being in a room full of people willing change to happen.

Did you all flip your calendar to see me as Miss April? It is my hope that my stint as an inspiring woman will not be over when April ends. I have been working on a project with Spinal Cord Injury Ontario - yet to be revealed - but I'll post it when it's done. Next week I'll be doing another "photo shoot" but this time for the London Health Sciences Magazine. I think this one is more along the lines of me having been a patient there in the trauma centre. I'll be interested to read what comes from that. Most recently I was contacted by a woman who runs an online publication about inspiring women from New Zealand! They want my story in 600 words or less - wish me luck with that one!

My biggest project right now is North Huron StopGap. The StopGap program has received a bit of attention in the media lately thanks to Luke Anderson, the project's founder. StopGap ramps are custom built, portable ramps designed to eliminate the barrier that one step creates for access. All businesses in North Huron (Blyth and Wingham) are invited to participate and get a ramp for free. I have the support of the Township and am looking for donations from local building supply stores. The great part of this is that the construction class at Madill is going to build them! We hope to get started surveying businesses next week. After we complete the North Huron project I hope I will have the same interest from Central Huron (Clinton) and then Goderich. I rolled around the square the other day...quite a few single steps that need a ramp!

On top of it all of course is the regular family stuff like arrangements for Easter, grade 8 graduation, orthodontics, summer exchange & camp plans and an upcoming holiday to Cuba with Mom, Lara & Karla! I am also still working on insurance and legal matters, booking medical and physio appointments, dealing with money matters and tax issues.

Some of these balls will soon come to rest and instead of being in the air they will reside in a place that I will call "message accomplished". That seems to be my mission these days, my curriculum is by design and my students are everyone.

I realize that I am taking a risk writing this. The risk that my insurance will say "if she can do all of this then she should be able to go back to work." But it's really not that simple. Most of this work does not require that I leave the house, or even my bed for that matter. It's more like having my fingers in many pies, but that's all - I am not eating them all at once ;)

Wednesday, 29 March 2017

No judgement

I had coffee with a dear friend of mine this morning. We griped, we laughed, we talked about our successes and our failures. Making and taking the time to sit down and just hash it out over a steaming mug of Les' cappuccino is always a good way to start a day. It was a good reminder that we all face challenges with our self esteem, our relationships, our work and just life in general. It's not just me. Not just us. And having good friends to listen without judgement makes all the difference.

No judgement.

The movie "Me before you" was released when I first started going to Parkwood as an outpatient. It's about a guy with paralysis who falls in love with his support worker. He is not happy even though they are in love. *spoiler alert* in the end of the movie he flies off to Europe in his private jet in order to have assisted suicide. I must have been in some strange "I can do anything" phase of recovery, because I found this storyline to be so unbelievable that I said as much to my Parkwood friends. Open mouth, insert both feet, and roll away. Yup, one of my friends had just lost one of her friends to suicide. Way to go Julie.

Depression is as common as 1 in 20 in the general population, and in people with a spinal cord injury it is 1 in 5.

Most of November, December and part of January were pretty bleak for me. When I ruled out that it was a not a string of back to back UTIs I didn't know where to look next. So I went to my Dr. and tried to explain how I was feeling. How incredibly sad I felt all the time. How I cried. Well, if you've been following, you'll remember the dark days. It was my Dr's idea that I try to get out that dark place by using medication. It had not occurred to me that I might need some chemical help for my brain, but as soon as he suggested it, I knew that it was the next thing to try.

I have been sitting on this post idea for a while now. Eight weeks to be exact. I knew I wanted to write about taking antidepressants; about how it made me feel to take them and about how they actually made me feel. Both are things that require time to adjust too. First, how I felt taking them was not like I was giving up. It just seemed to be the logical next step on a road to trying to feel better. And I have to say that it is working. Aside from the foggy head and the hundred mile stare that I had for the first couple of weeks (ask Elaine), it has helped me feel more positive. Feeling more positive means that I have the energy to do more therapy (and see results), do more work on the projects I have taken on and spend more time with my family. All good and necessary things.

Depression is just as much an open and festering wound as any other physical ailment - we just can not see it with our eyes. You would treat that open wound right away, wouldn't you? So why not, when depression is identified, would you not try and treat it? Now, having said that, there are other non-medication ways to treat depression like sunlight, exercise, diet and sleep. But when all of those options have been exhausted, one has to take other measures. Like antibiotics for an infection. In the end, when I die, no one is going to say "she was only able to make it work because she took antidepressants..." No one will say that about me. No one will say that about you.

Pet therapy. And I have started reading again, which has been great. 

Saturday, 11 March 2017

Red cord equals red face

This is the new physio system (top of the line, state of the art) at Glassier's Physiotherapy in Wingham. It is called RedCord. Ask anyone who has used it (able bodied or otherwise) and they will tell you it is tough. It is obvious from the look on my face how hard I am working here, but let me explain. I am holding onto handles that I used to do a rowing action which lifts my upper body off the bed. Then I pivot with my arms from side to side and lift my hips off the bed at the same time. This is the interesting part - I lift my hips. There is a strap under my hips but it is attached to the ropes above with bungie cords (stretchy ones) so in order for my hips to come off the bed my muscles have to engage.

If my shoulders and back were doing all the work here then my hips would stay on the bed. Can you see the air between me and the bed? I actually have core muscles (and maybe even some glutes and hip flexors) that are working to lift and turn my hips from side to side. This is new, it is different even from what I am able to do in the pool. This is good, because even though I am coming up on 20 months post injury, I am still seeing gains.

It even earned me a high-five from Mark - and that means a lot. If you want to see this in action checkout my facebook page.

Monday, 6 March 2017


On Friday night we attended the Inspiring Women in Huron Awards dinner. I had been nominated by my friend Selena and I asked some of my Huron County friends to join us. I truly cannot express how lucky I am to have relationships with so many strong women. This makes me think of how thankful I am. Thankful for Theo, my kids and my family - they are what keep me going. My friends - whom I can call upon for just about anything at anytime - listen and share and most importantly; they ground me. They help me to understand that I am not alone, not the only one with a challenging road. I am thankful for my physio team - Bill, Mark, Julie, Tammy, Melissa, Kristen and Barry - they have made my body recover in ways that seemed so out of reach not that long ago. I am thankful to Elaine - for everything but the shingles on the roof. I thank my lawyer and his staff - for keeping West Wawanosh Mutual honest. I am reminded of and thankful for the community support (from Blyth and beyond) with every passing bumper sticker and hello. 

I am thankful for the women who planned this event - honouring the female change makers in Huron. From arts and the environment to volunteering and sports - these women are the role models for our future generations. I was so happy to have Ella there with us, so she could see all the good things happening on our doorstep. She frequently asks why there is never anything "good" on the news - well there it was, all of the good things on stage for all to see. We also were treated to the spoken word magic of Holly Painter. What a powerful way to send a message. I was awarded the Be Bold for Change award. It was an honour. I hope to continue to create change in my community and beyond, but the only way I can do that is if everyone who is truly inspired (definition of inspire: to spur on) makes that change along with me. Honour your body, speak out about accessibility and share the road. 

Sunday, 5 March 2017

One step closer to normal

A long time ago I wrote about a conversation that I had with the partner of a fellow Parkwood patient. Her take on our collective new situations was  "the only way there, is through". This past week, after getting home from Parkwood, I had a lightbulb moment. An enlightening, life-reaffirming sign reminding me that I was indeed getting through. Closer to being "there" even though I have no idea what or where there looks like.

On that Thursday I had a chance to see my friend and mentor Chris. She is the dietitian for SCI patients (and more) at Parkwood, and this May, she will have achieved 29 years of living with paralysis. I have learned a lot from Chris, and not just about SCI nutrition. She has gone to bat for me, made connections for me and answered a million questions. I have lunched with her, bombarded her with emails, cried with her (more than once) and even toured her house. She is my inspiration.

So it was after I came home (after not having been to Parkwood for almost a month!) that I had my "closer to there" realization. Chris and I, like most friends who don't see each other often, did a little update about our lives. Then I launched into my "burning question of the week". This time it was "how do you do it?" I was referring to her ability to steam around the 4th floor like a mad woman, answering everyone's questions, talking to doctors, patients and nurses, charting, planning for meetings - in a nutshell work full time - and have a life with a spinal cord injury?

To me, because everything I do seems to take so much more time, I can not imagine how I will ever be able to make the time to go back at work. Having had her injury for so long now Chris can likely not recall the step-by-step process of making the small changes that add up to being able to work full time. But being the wise woman that she is, she gave me some great advice. It's just like adjusting to coming home after rehab. It is daunting, and scary, you need to figure a lot of things out, but you do. You plan, make your place as accessible as possible, and you tell others what they can do to help. You get through.

It makes sense, like returning to work after having your first child. Although that was important learning, it was NOT my lightbulb moment. My realization was how our conversations had changed. My burning questions are no longer about the basics of SCI bowel and bladder, they are about work. I have progressed along the continuum of recovery. One step closer to being in a place that seems, for lack of a better word, normal.

Thursday, 9 February 2017

The cost to arms

I used to think that I was developing bat wings. You know what I mean, those flaps of skin that appear on the backs of women's arms as they age? I was especially conscious of it while writing on the chalkboard and wearing something sleeveless. We can all picture our elementary school teacher conducting the school band/choir with a little extra "beat" in her arms? Right. Well if/when I do get back to teaching (not that I'll even be able to reach my chalkboard) I won't need to worry about saggy triceps because they are gone! The other day I was rubbing my arms (because they were sore) and I felt for myself the strength that lies beneath the skin.

You see the thing about having legs that don't work is that everything that your legs would have done now has to be done by your arms. Pardon me while I roll back onto my "Educating about Paralysis" soapbox.

Many, many people have commented on how buff my arms must be getting from wheeling myself everywhere. This is true, my arms are stronger from pushing my chair. But when I am in my chair I have the power of physics to help move me. (Right, Mark?) It's when I am not in my chair (or trying to get out of it) that the real strength comes from - lifting. Lifting my whole body weight to be exact. All 140 (ahemish) pounds. Every time I move from one surface to another I lift. From wheelchair to bed, wheelchair to car, wheelchair to toilet (and back - which is uphill). That is where the real strength is needed and comes from.

And exercise? You guessed it, all arms. Can't do legs only in the pool. Front crawl, back crawl, pseudo-breaststroke and almost-butterfly. All arms. No skiing without poles - skiing can only happen with poles. Hand bike - you get the picture.

So alas, my arms are tired but strong. It's my shoulders that I worry about. Without them I am pooched. I will not be able to transfer at all. So I have to protect them and make them strong too. No sloppy transfers or reaching too far. It also means being as lightweight as I can be. Someone (who will remain nameless) may have said something about a "cruise butt". Well, Barry, we'll just have to walk that off, won't we?

I wanted to take a picture of my buff arms but that will have to wait for a time when it is warm enough to be wearing less clothing.