Well Hello 2018!

So...my plan to be more present here was all shot to hell by a number of things. That saying "Life is what happens while you're busy making plans." about sums it up.

It started out with my father in law being diagnosed with terminal cancer just after New Year's. We lost him a few weeks later and things snowballed from there. I have been dealing with a whole slew of health stuff, not the least of which was the worst NMO attack I've ever had. It landed me in the hospital for 12 days, where, I promptly caught flu. I have never had flu in my life and had to go to a hospital to get it. Putting someone who is triple immunosupressed anywhere but in a private room is sheer stupidity. Let's just say it was a hellish 12 days and they sent me home sicker than when I arrived. I am still struggling to recover. So far, 2018 has been rough.

On a more positive note, I was contacted by The Rick Hansen Foundation just before Xmas, asking if I would be interested in writing for them about invisible disability. I was very surprised. I didn't even know I was on their radar. Apparently once you've been a Difference Maker, you are a part of the family. I am pleased to share that my first article was published on March 4th, while I was still in hospital. You can find it here. Rick Hansen, for those who aren't familiar is a Canadian icon and one of my personal heros. You can learn more about him here. I am humbled and honoured to have the opportunity to share my story and experiences as someone living with invisible disability, rare disease and chronic illness. 

I have been keeping busy working with my UBC Health Mentor students. In my current cohort, (my fifth!) I have two women and two men. The women are a student in speech & language pathology and a medical student. The men are a nursing student and occupational therapy student. It's the first time I've had male students and I've been enjoying the new dynamic. My students are so great to work with. We laugh a lot and I am really enjoying spending time with them. I am going to miss them over the summer. (After April's symposium, we don't meet till October and our last meeting for this cohort will be in November. The time always whips by so quickly.)

I also volunteered to work with the UBC Physiotherapy program in early February to help their students learn about assessing Rheumatoid arthritis patients. It was really good timing for the students to assess me because I am having a big flare and so they got to see and feel first hand what that looks like. I've worked with the PT program twice before helping students get their patient interviewing skills but this was new to me. I enjoyed learning too. The students in the PT program are such lovely people. I always enjoy working with them. I will be doing more of this type of volunteering in a couple of weeks through the same program, but this time at the local hospital's arthritis clinic. 

Since I've been home from the hospital and still dealing with some serious health issues and having treatment, I've been forced to stick pretty close to home and take things easy. My best friend gave me Rae Massigman's Pocket Journal class for my birthday, so I have slowly been working on my little journal. It's been fun playing with paint. 

My mother in law sent me a cheque for my birthday and I treated myself to some new art supplies yesterday-two stencils, a set of stamps and some cool paper. I haven't bought art supplies in ages-in fact I had recently gone through my stash and purged a big chunk of it. I donated the excess to a friend who teaches art to kids. I know she will put it to good use. I am not a hoarder of supplies. I like to use what I have and there was so much stuff I've had sitting around, taking up space that it seemed like a good time to pare down and reorganize. I am really glad I did it. I have all my paints, stencils and water soluable oil pastels in one of those Ikea rolling carts. Best thing ever! I can roll it right up to my desk and have everything I need right there. I can also roll it out onto my patio in the summer and spend the day creating outside. My plan is to get a nice patio set (small table & comfy chairs) so I can have an outdoor studio by day and a nice place to have dinner al fresco by night. Indy likes to spend most of his time outside on the patio when the weather is warm and I think I would like that too. My patio has a big shade tree in front, so it stays nice and cool out there. I am on the hunt for the right furniture to make this happen.

My best friend and I went to see Isle of Dogs last weekend. I wanted to see it for the art. It's a Wes Anderson stop motion animation film. I wouldn't say it's for kids-I think they'd quickly be bored. It's aimed more at fans of the genre. Lots of big names in this one. What surprised me was that it was about 2 hrs long. Usually with animation, the films are much shorter, so well done Wes Anderson! The are billing it as a comedy, but while it had some funny moments, I didn't think it was, really. My favourite line in this film was "Fear had been mongered." I enjoyed it and if you like this sort of thing, you'd better go see it before it's out of the theatres. 

So that's the Cliff Notes update of where I've been and what I've been up to. I am going to make a concerted effort to get back into regular blogging. Back soon!

Imagine That!

This morning, I had a meeting at the MS Society Lower Mainland Chapter offices to do some planning for a presentation I'm going to be making at an upcoming Peer Support Training event on crisis and suicide intervention. 

When I arrived, they had a surprise waiting for me:

They've just redesigned the information brochure for the Peer Support program and guess whose work is on the cover?! Yes, it's mine! The photo was originally taken for an article I wrote for someonelikeme.ca (the MS Society's website for younger people who either have MS or have a loved one with MS) about the value of support groups. 

I had no idea they were going to do this, but I'm pretty pleased about it and it was a really nice surprise. These brochures will go out to clients who have been newly diagnosed with MS to let them know what the Peer Support program has to offer. I couldn't be more pleased!

But that wasn't all....They also let me know that the interview I did a couple weeks ago with Tiina is now up on the website as well. It's here if you want to take a peek. Thank you Tiina for doing such a fantastic job!

After a rather rough start to the week, things are looking up!

Beautiful Mistakes

Tying up a few loose end, from the Rick Hansen relay in this post.

The day I shot this photo, taken on Thermal Drive, as Rick Hansen was wheeling his way up, Vivienne posted about beautiful mistakes. Ordinarily, I would have deleted this photograph because it was blurry. Fortunately, I read Vivienne's post before I looked at what was on my memory card and as a result, I saw this image in a completely different light. I think in it's own unique way, it captured the feeling of that moment perfectly. It's become one of my favourite memories from that day.

 There was also this shot, taken at the summit of Thermal Drive, when the relay paused for about 15 minutes, so Rick Hansen could address the huge crowd that had come to watch him conquer the infamous hill once again. It's another beautiful mistake that was meant to be. If you could actually see my brain taking a snap shot of that moment, this is exactly what the memory would look like.

And lastly, I wanted to share this photo with you. When I was on the shuttle bus, riding to where my relay start point was, I spotted this sign and pointed it out to the others. Wendy stopped the shuttle, so we could get a photo. I didn't have my camera with me-my husband had it so he could get photos of me, so Wendy kindly sent this to me the other day. It was really sweet of the church to think of us. It meant alot to us.

Okay, I think that's the last of the photos now! I'm finally all caught up!

Rick Hansen 25th Anniversary Relay, Final Day & Concert

So this post brings us to the final day of the Rick Hansen relay. Day 273 took place yesterday in Vancouver, with the final End of Day Celebration at Terry Fox Plaza, in front of BC Place Stadium.

There was an entire school from Chilliwack who were bussed in to sing. These are the kindergarten kids in their paper crowns. Adorable!

Leading up to the final medal bearer and Rick arriving, they were showing footage of the relay from across Canada on the big screen.

Vancouver Mayor Gregore Robinson and an MLA from Richmond watch Rick's arrival.

This is the media crowding in around Rick. If you look at the centre of the photo, you can just barely make out his knees. They were actually standing on the ramp he was trying to wheel up to get on stage. I have marveled alot the past few days at his ability to gracefully handle being mobbed. Being in a crush of people freaks me out. He's far braver than I am!

Finally, they moved off the ramp so he could wheel up on stage.

BC Premier Christy Clark.

Some of the Vancouver Police department were on hand. I was surprised there weren't any RCMP officers present-they usually show up for big events. I guess because Vancouver has their own force, they were the ones invited.

 Rick and the end of day Medal Bearer, Amanda.

  

I wanted to recognize an unsung hero of the relay. This is the official photographer who has worked super hard, coast to coast capturing the memories for all the Medal Bearers. Her job is largely invisible (when I spoke to her, she said she actually kind of likes it that way) but her work was important to each and every person who was a part of this incredible journey. She's our Difference Maker. 

These are a pair of the gloves Rick wore during his Man in Motion World Tour. Wow, just wow.

They had a huge set of banners up for people to sign, so I added my name.

We don't often see police horses in the downtown core. The last time I saw them was during the 2010 games. In the summer, the mounted division of the VPD patrols Stanley Park on horseback, but it's a bit early for that here yet.

Terry Fox Plaza. It's fitting that Rick's Journey always ends here. 

Later in the evening, I went to the Rick Hansen Celebrate 25 concert. It was fabulous. What none of us knew was that it was being taped for television and will air on June 24th. It was an amazing night. Shawn Koyczan (if you watched the 2010 Opening ceremonies, you'll remember his stirring poem, We Are More.) performed with Don Alder, an amazing and gifted acoustic guitar player. (Look him up on iTunes-you won't be sorry!) Shane KILLED IT with a poem about Rick Hansen's life story. I can't wait to hear it again with the tv special airs. 

Sarah McLaughlin was beautiful and Jann Arden had everyone laughing. It was a night to honour heroes, the Difference Makers. The whole thing was just so amazing-not really something I can adequately convey in words. You just had to be there.

At one point, there was some information up on the big screens and it said that if Rick sustained the same injury today that he suffered when has was 15, chances are, he'd walk away. THAT is how far spinal cord research has come and that's happened because of him. 

1 country

600 communities

7000 Difference Makers

273 days

1 medal

= Inspiration from coast to coast to coast!

The Rick Hansen 25th Anniversary Relay, Part 1

Hello friends! I know you've been patiently waiting for a report on how the last couple of days went. I am going to start with the relay and then back track to the gallery opening afterwards, so bear with me! There were a ton of photos on my memory card, so I've picked the best ones to share with you. I'm going to divide them up over a series of post for the next few days because I want to try and relate how amazing this whole experience was. The photos you'll, see are mine, unless they say RHF (Rick Hansen Foundation) below. In that case, they were taken by the official photographer of the relay and are being used with permission.

Okay, so here we go!

Friday morning, I got up at 5:30 am and got ready for the big day. My sweet husband was up before me and cooked me brekki (bacon, eggs & toast) to make sure I'd be properly fueled for the day. He's my Difference Maker-he takes such good care of me.

At 6:30 am, we headed over to the Evergreen Cultural Centre, the rendez-vous point for my flight of medal bearers. We knew we were in the right place, with the shuttle van parked right outside and a welcoming sign.

Wendy, our shuttle driver and Kayla, our Medal Bearer host were there to greet us, give us our uniforms and welcome us to our big day. After all the medal bearers arrived (there were 10 of us) we had a brief meeting where Kayla & Wendy talked about Rick Hansen and why this relay was so important and then we went around the circle and shared our stories. I was a bit nervous, so I said very little. (Yeah, go figure!) In fact, I'm not even entirely sure what I said...*laughs* It's all a bit of a blur.

In my group there was an elite runner, a teacher, a politician, a woman who works with people with disabilities, a student, a woman who works for the City of Coquitlam, an Olympian, a couple people who were nominated by their employers and me.

 I was medal bearer 007! Love that!

 Along the route, the relay team had posted medal bearer numbers on poles to mark where our portion of the relay would start.

The relay staff were very sweet and peeled the numbers off the poles to give to each of us as a keepsake. This is mine plastered on my back, once I'd been dropped off by the shuttle in my spot.

Here's Bob, a teacher in Coquitlam at Scott Creek Middle School handing over the medal to me.

He's a lovely man and he's about to hug me here. The schools had a professional development day yesterday, so even though the kids were off, they still got up early and came to school (Bob ran right past his school) to support him. That says alot about the kind of teacher he is!

The official Rick Hansen relay medal that has made its way across Canada for the last 269 days. When it finishes its journey, it will have been on the road for a total of 273 days and been carried by 7000 Difference Makers across this great country of ours. As you can see, it's been well loved-it's quite scratched, but that only adds to its charm.

The medal, made by the Canadian Mint is almost a full pound of silver, so it's quite heavy. The imprint you can see on it is from the glove Rick wore when wheeling around the world. It's symbolic of Rick passing the medal to each and every Difference Maker along the way. I was extremely honoured to carry it.

Photo Credit: RHF

My moment! Travelling along side me was a relay escort, who was super nice and a relay endurance athlete, who was riding a hand crank bike. We chatted the whole way. Indy and my husband got to walk with me, which was really nice. There was a large motor home in front of me, where the official RHF photographer were riding. The back of the motor home flips up and open, so the photographers have a clear shot of the medal bearers, travelling behind. 

Photo Credit: RHF

Tina Louise and I high-fiving as I pass the medal onto her.

Hugs! Note that the traffic is backing up-we were in the right hand lane, sandwiched for safety by the relay convoy, but the left hand lane was open to traffic, because it was morning rush hour. People were slowing down to look, so it became a parade.

You'll notice that Tina Louise has two numbers on her jacket. She ended up running a double section of the relay. (No problem for her-she's an elite runner!) Medal bearer #8 never showed up. I can't even imagine missing out on this opportunity-I'd wouldn't miss it for anything. I'd go, even if I had to drag myself there! Hopefully whomever it was is okay!

So...that's the first post on the relay. There's much more to come!