2016: Year In Review

Hello to those of you who have hung in, waiting patiently for my return to blogging. It's been a tough year for me physically, so that's why the extended absence. Anyway, not being one to dwell, here's what 2016 looked like:

January:

-My friend Sam Bradd spoke about life as a graphic recorder at Creative Mornings Vancouver.

-I returned to Toronto to do my second term as the Community Representative for BC. This time I was doing grant reviews for Community and Population Health for the MS Society of Canada. I got to have dinner with my NMO sister, Jenna, which was a bonus.

-I won a class with Vivienne McMaster on iPhoneography. I took this shot, which she like so much she used it to promote the class since.

-Inspired by that class, I dove back into photography. I took this shot shortly after and I love the odd perspective.

February:

-I won a class with Tara Leaver called Oracle Cards and made a deck of mindfulness cards from gelli prints I made.

-I won tickets to the premier of Race about Jesse Owens from the BC Sports Hall of Fame.

-I got new ink-my campersand tattoo which was an Xmas gift from my son. Every time I look down and see it, it makes me so happy.

-Husband and I enjoyed the warmer temps with a trip to Granville Island. (The tree was decked out for Chinese New Year.)

March:

-I flew to LA for 3 days for the NMO Patient Day. I had a great time connecting with my community. I also tried Uber for the first time.

-I screened for a clinical trial. After jumping through extensive hoops, I was excluded from the trial, which was very frustrating.

-For my birthday, I took an online class with Roxanne Coble called Creatures. Playing with paint is always so much fun.

-My husband and I celebrated with surf and turf at the Keg.

April:

-My friend Isabel treated me to an evening at the VSO featuring Canadian astronaut Commander Chris Hadfield. This goes down as one of the best musical experiences of my life. I am still listening to Holst's The Planets: Jupiter.

-We started taking Indy up to the lake-it was finally warm enough.

-We went to a belated birthday dinner for me at Storm Crow Alehouse. Love Han Solo in carbonite!!

-My Health Mentors students and I did the annual symposium.

May:

-I spoke at UBC at the Operation Med School about the work the MS Society of Canada does and about NMO. I did an interactive piece where students could experience some of the symptoms people living with MS and NMO deal with on a daily basis which was a huge hit.

-I also gave a short speech to Port Coquitlam City Council and accepted a proclamation from the Mayor on behalf of the MS Society. My husband came along and this was the first time he's heard me do public speaking. Afterwards, he said "I could never do that!" It gave him a quick glimpse into some of the advocacy work I do all year long.

-I started a lettuce and herb farm on my patio.

-I took this wheelchair photo on False Creek, which is one of my most favourites this year. I call it "Gone Paddling". It speaks to ability.

June & July:

(Lumped together, because by this point, I was very unwell.)

-Another most favourite photograph of Indy up at the lake. I love that it's partly out of frame and shows him wildly swinging his water Kong and his teeth. He is in utter bliss retrieving and swimming.

-Vivienne gave a talk on self-love at Creative Mornings Vancouver. Even though I was feeling terrible, I wanted to go to support her.

-I won a class with Bella Civoric, Holy Hush. This was the kit that went with the class.

-We made a few quick trips to the Farmer's Market to get fresh veggies. I always love supporting our local farmers.

August:

-After suffering with brutal tendinitis in my right arm for 8 months (at this point) the brilliant arm surgeon decided I just needed a custom moulded brace. *sigh* Here it is now the last days of December and I am still in pain. *SO* not helpful.

-Spending 14 weeks in bed over the late spring and entire summer had one bright spot-the Olympics & Paralympics were on. It cheered me greatly to watch our women's footie & rugby 7's win bronze medals and to watch WC Rugby.

-At the tail end of August, I started on Rituxan infusion to treat both my RA and NMO. Making the shift in treatment was weird.

-I actually managed to eek out a wee bit of art during this time, inspired by Mandy Stewart.

September & October:

-Husband and I went on a date to a new local bakery, Gabi & Jules who do amazing pies. They sell at our local Farmer's Market and just opened their brick and mortar store. It's great to have such a nice place to have tea and pie when the mood strikes.

-I had the opportunity to visit the Museum of Anthropology at UBC for free and to take a tour that talked about activism and art through the Creative Mornings Vancouver Field Trip program. I have had a visit to MOA on my life list forever and this seemed like the perfect time to do it. I left feeling super inspired by everything I saw. It's the kind of place you can return to again and again and see something new or see something in a different light each and every time.

-Autumn weather finally arrived and with it, cooler temps, which I was grateful for.

-We celebrated my husband's 60th birthday, which given the last few years of very serious health issues, is a milestone that at times I didn't think we'd see. A week later, we celebrated our 26th anniversary.

November:

-I started off the month with a few days in Seattle with my best friend, who was having cornea transplant surgery. It was interesting to see how the US health care system works. One tiny bottle of eye drops cost over $200 down there. It would have been $35 at home. *boggles*

-I volunteered at the Women Against MS (WAMS) annual luncheon and got to meet Canadian soccer two time Olympic bronze medallist, Christine Sinclair. I am a huge fan of women's footie! Loved crossing that off my life list!

-The MS Ambassadors had their annual forum at UBC. It was a great day connecting with fellow ambassadors, learning about the changes being made to how the MS Society operates and to hear about some current research being done.

-UBC NMO Patient Day was also held in November.

December:

-The first week of December I flew back to Toronto because I was invited to attend both HEARMS Day and the ENDMS conference. It was an incredible opportunity to connect and learn with researchers from across Canada and from around the world. It goes down as one of the best experiences of my life. I will be writing more about it in the new year. 

-I finally got a chance to meet my fellow SomeoneLikeMe.ca blogger, Juan Garrido. We've been writing for the blog for together for over 4 years, so it was really wonderful to finally spend some time with him. 

-I also reconnected with Dr. Sam Davis, who is a professor of neurology and neurosurgery, as well as a researcher at McGill University. Sam was the Chair of the first grants review committee I served on (Personnel) and is such a kind and lovely man. We caught up over breakfast. 

-I also got to catch up with the fabulous Dr. Karen Lee, Vice President of Research for the MS Society of Canada. She's expecting her first baby in the spring and I'm so excited for her!!

The rest of my December was snow, (which is unusual for Vancouver and the surrounds. It started the day I left for Toronto and pretty much has continued ever since. We are more than ready for it to be gone.) baking & celebrating. 

New Year's Eve will mark 27 years since our first date. (A hockey game-what else? We are after all, Canadian.) It seems crazy to think it's been that many years.

 All in all, it's been a challenging and very full year.

Happy New Year everyone! Here's to 2017 being kinder, gentler.

Nothing Is By Chance

So...back in early December, I broke a tooth. In less than 24 hours, I had an infection. I happened to be out at UBC the next day for a CIRCLES blood draw and an advisory meeting, so while I was there, I popped into Urgent Care to get some help. (Which in this case was antibiotics.)

Any time I interact with health care professionals, I tend to have to give them a crash course in NMO because 99% of them have never even heard of it. In this case, it was important because I am immunosuppressed, so getting an infection was a big deal. The folks at urgent care were super nice and I was a bit stunned that in less than 10 minutes from the time I walked in the door, I was being seen.  I was in and out in less than half an hour. That never happens!

Landon, the nurse who was looking after me was really interested in learning about NMO when it came up as I was giving my medical information. I love sharing information when someone is open to learning from their patients. You know you're in good hands when your health care providers listen to you and treat you as a partner in your care. As a patient, that level of respect is deeply appreciated. We had a good talk about NMO and I gave him my card so he could connect to NMODiaries and the Guthy-Jackson Foundation.

In mid-January, I received an email from Landon out of the blue. It turns out, he does a medical podcast about ER nursing called NursEM, which has subscribers worldwide. He next podcast was going to be on MS and he felt that it was important to talk about NMO since people with NMO are often mis-diagnosed with MS. Because NMO is so rare, he realized that it was likely someone would know his patient was me, so for confidentiality reasons, he wanted to ask my permission to talk about our paths crossing. I knew his podcast would help spread awareness for NMO, so of course I said yes.

Last night, the podcast went live. It's available in both English and French and you can download it for free here. It's episode #14 MS/NMO. He and his co-host begin by talking about MS being Canada's disease and about some research Dr. Traboulsee at UBC is doing. Landon talks about NMO around the 18 minute mark, but it's worth listening to the whole podcast. 

If you'd like to learn a bit more about Landon, you can read about him here. I just discovered he's a Queen Elizabeth II Diamond Jubilee medal recipient too! Small world!

You just never know whose path you are going to cross! I am grateful to have met Landon and that he chose to take what he learned from our meeting and share it with a wider audience. Someone listening to his podcast could use that information to help an NMO patient in an ER room somewhere, someday. Awareness is everything and allies are priceless.

Good Things!

Hello! Hello! I hope things are going well in your little corner of the world! It's been a very challenging summer. Last week, as if we didn't have enough excitement around here with health issues, mother nature decided to have a go. We got a major storm here on the west coast with 80km winds and rain. Trees went down all over the place-two went down across the street at the neighbour's and took out his fence and the rear window of a car parked across the street. In a matter of minutes, surrounding neighbours came with their chainsaws and handsaws to help. The trees were blocking the road (and the bus route) but they were able to dismantle the downed trees enough to clear the roadway. I live in an awesome neighbourhood!

We also lost power at noon on Saturday and it wasn't restored until late Monday night. We lost the contents of our fridge and deep freeze. It took us 3 hours to clean that up-you can't just put everything in a garbage bag and toss it out. Because of environmental measures here, you have to separate food from packaging. The packaging has to be rinsed and recycled and the food goes into the green recycling bins. Let's just say dealing with dead spoiled fish is not fun. YUCK! It was challenging restocking our fridge too-many of the local stores were also without power for days, so they lost all their perishables too. My fridge is still pretty empty, but I'm working on it. The good news is we got much needed rain and we are okay. We played alot of cribbage, burned candles and when it got dark, made our way around with flashlights. We were completely off the grid at home-no power, no lights, no hot water, no Internet. It was like indoor camping for 3 days.

Now that things are back to normal, I wanted to share that I've finally got copies of my latest zine, Manual Dexterity #4 available in my Etsy shop. I also had a few people ask me about Manual Dexterity #3, the Hallowe'en/Autumn issue I did a couple years ago. I managed to scare up a few copies (see what I did there?) so they are also available. I have limited copies, so if you want one, I suggest you act fast!

                  

I also really excited that my new advocacy business cards from MOO have arrived! For some time now I have been wanting to make some specific to the work I do as an advocate for NMO and MS. I finally got around to it. I've ordered business cards from Moo for years and have had nothing but exceptional service. Seriously, they exceed my expectations each and every time. I decided to order the rounded corners on my cards and to go with the standard business size this time, instead of the mini cards which I love so much. (And can't stop ordering!) They were in my mailbox this morning and they are GORGEOUS! I am going to be so proud to hand them out!

If you'd like to order some for your very own, you can do so here. By clicking the link, you will receive 10% off your first order. Can't beat that!

So..that's the latest news. I am looking forward to Autumn which will be here soon-I'm counting the days!

Hello TO!!

Last week I flew to Toronto to meet with the Canadian MS Society's Personnel Grants committee. It's mind blowing that it takes the same amount of time (just over 4 hrs.) to fly 3/4's of the way across Canada as it does for me to drive through the mountains to my in-laws' in the interior.

Along the way, I got to see two of the Great Lakes-Lake Superior (left) and Lake Huron (right). When we were landing in Toronto, I was stunned to discover there was no snow on the ground!! Here I'd purchased brand new snow boots just for this trip and there was nothing! It's a good thing I'd packed a pair of shoes. Crazy!

I took the Rocket bus from the airport to Kipling Station to catch the subway (left) into downtown. It reminded me alot of the subway in NYC. So different from our skytrain here-it's a much older system and runs almost entirely underground. I was also surprised that they have actual people sitting in the subway to collect fares, rather than having automated ticket machines like we do in BC.

It was about an hour from the airport to the hotel I stayed in, which was a Hilton right downtown, just a block away from St. Patrick's station. The photo on the right was my view from my hotel room.

Monday night, the Canadian MS Society took our team out for dinner at The Queen & Beaver. We had a lovely dinner and then everyone headed back to the hotel to rest up for the big meeting the next day. I won't go into detail about the all-day meeting on Tuesday-that's another post, but let's just say it was intense, hugely interesting and I came away with a full heart and a deep sense of satisfaction for the work our team did together.

Wednesday, I had the entire day to sight see before catching an evening flight home. My friend Jenna, whom I write with on NMO Diaries lives in TO, so we finally had a chance to meet. We had dinner together Tuesday night and then she picked me up on Wednesday morning and drove me all over the city. I really appreciated her taking time out of her busy life to be my tour guide. She did a fantastic job.

We started our day having coffee (tea!) at Casa Coffee in this cool little neighbourhood. Jenna said that in the summer, they close the street here to traffic and it becomes a funky street market. I love the indie of this coffee shop-it had a whole old school candy counter at one end and the ceiling was decorated with a ton of globes. The photo doesn't really do it justice. The conversations of the locals were highly entertaining-it's such a small space that you can't help but overhear what other people are saying. I kept catching snippets of things like "She was only wearing a g-sting and a fur coat..." and "Here comes the Russian Mafia!" and "I am totally dressed for fashion week man!". I had to keep my back to the locals because I couldn't stop laughing.

Here's Jenna and I in the coffee shop. I think I need a selfie stick!

 Afterwards, we made our way to the alley ways where Rick Mercer does his rants for his show. Of everything you could see in Toronto, this was the one thing I was most wanting to see. 

The lane ways seem to go on forever. There's so much amazing graffiti and I only managed to see a small fraction of it. Part of that had to do with how cold it was: -13C. It was too cold to be standing around for too long and taking off your mittens to take iphone photos. I might have fared better with my DSLR camera, (I can operate it with gloves on) but I opted not to bring it this trip. I did however record my own rant which I will be posting to Rick Mercer as soon as I get a chance to upload it. Silly but fun!

We did a drive by of the Hockey Hall of Fame, or as die hard Canadian hockey fans would call it, church. (Hockey is a religion in Canada.) Really cool building-Toronto has some gorgeous architecture. 

And then there was of course, the obligatory viewing on the CN Tower. Jenna very kindly offered to take me up, but as we were sitting there on the street, the observation deck was being swallowed up by clouds. No point in going all the way up to see absolutely nothing! I was fine with it-I've done the Space Needle in Seattle, so it wasn't really a big deal to not go up.

I loved the little trolley buses. This shot shows the old ones. The new ones look very much like Japanese bullet trains. I had hoped to find time to ride one, even briefly, but just didn't get to it. 

For lunch, we went to Trattoria Nervosa in Yorkville. It was a really cool Italian eatery. We ordered a traditional Italian pizza and a Caesar salad to share. The selfie (right) was taken in the entryway. I loved the medallion on the floor. The bike was just around the corner in front of one of the many trendy little shops. I had a great time visiting with Jenna and getting to know her. We'll see one another again in early March when we both fly to LA for NMO Patient Day.

Jenna dropped me off at one of the subway stations after lunch and I made my way back to the airport, just in time to get through an enormous backlog at the security checkpoint. Fortunately, I was able to go through an accessible line, which was a life saver. My flight home was rough-we had major turbulence the entire way and I didn't get out of my seat the whole time. Normally, I don't mind turbulence-that's how you know you're flying, but I was feeling a bit under the weather and so it wasn't as much fun as it normally would be. Fortunately, our flight arrived 1/2 hour early, so that kind of made up for it.

I really enjoyed my trip to Toronto. I'd never been before and that's now as far east in Canada as I've ever been. I plan to write about the actual work I was doing there for the Canadian MS Society, but it will be posted over on their site, when I do. 

So...I am home now and playing catch up with various things-laundry, emails, blogging, etc. (Oh the glamour of it all!) I have a few projects in motion that need my attention. I'll be making a list first thing tomorrow morning. No rest for the wicked!

Nominated!

I keep forgetting to post about being nominated for a Health Activist Hero award. I was nominated by Lisa of Damsel in a Dress fame. (Thank you Lisa! I am humbled.)

If you would like to endorse (vote for) me, I would love that-if I win, Wego Health will make a donation to the charity of my choice. Voting is open till the end of December. Just so you know, you can only vote once, so it's pretty quick and painless. To vote for me, click here. 

A heartfelt thank you to the 48 people who have voted for me so far. You guys ROCK!!

Additionally, the blog team of Someonelikeme.ca, the Canadian MS Society's blog for younger people who either have have Ms or have a loved one affected by MS has also been nominated for a Best Team Award. I've been writing for Someonelikeme.ca since the website's inception almost 4 years ago. If you'd like to take a moment to endorse our team, I'd really appreciate that too. 

You can vote here.

Please feel free to share this post with your networks-the more votes we get, the better the chance that we'll win and the MS Society of Canada and the Guthy-Jackson Foundation will receive donations! 

Exciting News!!

So...I have been keeping something very exciting under wraps for just over a month now, but I can finally tell you about it. In September, I applied to be a Community Representative for the Canadian MS Society and I received an email indicating that I'd been accepted as the representative for British Columbia at the end of October. 

A Community Representative is someone who is affected by MS-either they live with MS themselves or have a family member who does. In my case, I lived with an MS diagnosis for 5 years before being re-diagnosed with Neuromyelitis Optica (NMO). I have a number of close friends who have MS and I also have members of my family who live with or have lived with MS as well, so my ties to the MS community run deep. 

Community Representative assess MS research grant applications to ensure ease of comprehension and relevance to MS and offer valuable insight throughout the review process to ensure that research dollars are spent wisely on projects that will have a significant impact on those affected by MS. Each Community Representative spends significant volunteer hours reviewing, evaluating and recommending studies for funding by the Canadian MS Society. 

I have been assigned to the Personnel Awards Review Committee, which is responsible for reviewing Masters, Doctoral and fellowship applications that are involved in both biomedical research and clinical and population health research. This committee is made up of one chair person, ten scientific reviewers (Doctors) and four community representatives. 

Over the next month, I will be working hard on the review process and then in mid-January, I will be flying out to Toronto for a meeting to go over in detail each application our committee has reviewed. 

I am very honoured to have been selected to participate in this process and to have the opportunity to have an impact on the future of MS research in this way. I am really looking forward to working with my committee (I think it will be an excellent fit!) and am excited to learn new things. 

The Canadian MS Society will be posting profiles of each of the Community Representatives on their website soon. If you'd like to learn more about the Canadian MS Society's research program, you can do so by clicking here.

What's Been Going On

Last Saturday night my husband and I went to the PNE (Pacific National Exhibition) which is the big annual fair. They always have a summer concert series and last night, the fabulous Melissa Etheridge was playing. I've loved her for a long, long time and years when my husband and I were first married, we got tickets to see her at the Orpheum. He didn't know who she was, but he was so impressed by her, he fell in love with her too.

The beauty of the concert space at the PNE is that the view is so spectacular. You can see the north shore mountains, as well as several of the big attractions at the fair all lit up. Add to that a world class artist who knows how to throw a party and it's magic.

At one point in the concert, Melissa brought out a gorgeous electric guitar in vintage aqua, the same colour as my studio. I have no idea why, but this made me insanely happy and I sat there with this big stupid grin on my face the whole time she was playing it. I WANTED that guitar. The crazy thing is, I don't play but I seriously wanted that guitar. If I had that aqua guitar, I would learn to play, even with numb hands.

At one point in the evening, she talked about being cancer free for 9 years and not just being a survivor, but a thriver and then she sang "I Run for Life", her breast cancer awareness song. Saturday night she added lyrics to include male cancer survivors too. Listening, I was trying hard not to cry. It's become so personal for me, especially right at this moment when we're almost at the 1 year anniversary of my husband's diagnosis of kidney cancer. My heart's a little tender about that right now. This year has been one of the hardest of our lives on so many levels. It's our deepest hope that at some point we'll be able to say he's 9 years cancer free too.

It was a fabulous concert and it cheered my up greatly. The only downside was the yahoos sitting around us. There were three separate couples who decided to have loud arguments while Melissa was playing. Who does that?!? They were so obnoxious I was having trouble hearing the music. (And if you know anything about Melissa Etheridge, it's that she rocks the h*ll out of her concerts, so that tells you how disruptive they were being.) One couple was actually arguing about how many strings were on the guitar she was playing, if you can believe it. I'd have liked to El Kabong them with it just to shut them up!

I know things have been kind of quiet here lately. I've been struggling with my health again. I've spent alot of time in bed and it feels like my left leg is going to stop working any second now. My immune system just refuses to stand down, so they've upped my immuno supressants again and we'll see how it goes. At this point, I am just tired of the whole thing. Nothing seems to work.

Yesterday I finally met with the hand surgeon about my broken wrist. After a very painful exam which left me dizzy and about to toss my cookies, he did two diagnostic injections of steroids and freezing into the two parts of my wrist that are the problem. Let's just say when a needle hits bone over and over, it's torture. The pain from that is excruciating and it's going to be days till it settles down. In the meantime, am gobbling pain pills and icing it as much as possible. I was extremely grateful my best friend was there to hold my good hand while all this was done and to make sure I got home safely. She was a huge help and comfort to me. 

I see the surgeon again in six weeks and then we decide which of two surgeries is going to happen. One involves removing a bone and the other involves shortening a bone. I'm pretty freaked out about the whole thing, especially the bone shortening prospect. That's got to be painful. Clearly something has to be done and I am hoping it will be taken care of before 2013 is over. This is dragged on for almost 6 month now as it is and I'd really like to have my right hand functional and pain free again.

When I got home from the hospital yesterday, there was a message from my husband saying he'd been injured on the job and he was at the ER. He tripped over a metal bar that the carpenters left sitting on the deck at his job site and fell between some columns, landing on the shoulder on the same side he had his arm surgery on a few months ago. He is okay, thankfully-nothing broken or torn-he's just understandably sore. Yesterday was about all the trauma I could handle in a single day.

On a positive note, I was asked to be a guest speaker at the 2nd annual NMO Information Day. I will be presenting on the Interprofessional Health Mentors Program that I've been involved with. I am so pleased to have this opportunity and look forward to sharing with other NMO patients how our stories matter to the medical community. My friend Nancy will also be presenting on the first ever (anywhere in the world!) NMO walk/run that she organized this past May.

If you are local and are interested in attending NMO Information Day, you can register here. If you're coming, be sure to find me and say hello!

Also in the good news department, my friend Andrea informed me the other day that it looks like two of the photographs I took for the Para XC Ski Program, Skiing is Believing are going to be published in a magazine! It won't be official till we see it in print, (with magazines, things are always subject to change) but we're pretty confident this is going to happen. Andrea's going to make sure I get some copies, so I'll share them with you when I have them in hand. I'm really excited about the prospect of having my photography appear in a sports magazine-that will be a first for me! If you're interested in seeing all the photos from that day, the entire set is here on my Flickr. It was such an amazing day and I'd do it again in a heartbeat.

Last, but not least, today is A&W's Crusin' For A Cause Annual MS fundraiser. If you're Canadian, please try and stop by any A&W location and purchase a teen burger-$1 from every burger goes to MS. If hamburgers are not your thing, but you still want to help, all locations are happy to receive donations to the Canadian MS Society. You can also use the hashtag #crusinforacause on Twitter on any of your tweets today and $1 for each tweet will also be donated. It's a very simple way to help fund the important research and support programs the MS Society provides to both people living with MS and also those of us rare birds living with NMO. (The CDN MS Society has very generously taken Canadians with NMO under their wing and are offering us the same services as those with MS.)

An Important Conversation

Join the first #AKchats on Twitter,Fighting for Care.

When you have multiple sclerosis, cerebral palsy or another chronic illness that accelerates the aging process, where do you turn for long-term care? Hospitals and nursing homes seem to be the only options. Anna-Karina Tabuñar (@AKTabunar) explores this important topic featuring special guest, 

Lelainia Lloyd (@tatterededge).

 Join the conversation on Twitter using #AKchats on 

Monday, May 13th at 9 a.m. PST. (12 p.m. EST)

Learn more by visiting Anna-Karina's website.

 *****

I'm so honoured to be invited to be a part of this.
I hope you'll come join this important conversation.

Life Without Compromise E-book

This morning I had a lovely surprise waiting for me online when I woke up. MV1 Canada let me know that I have been included in their Life Without Compromise e-book!  You can view & download it here. Please feel free to share this e-book with whomever you like! I am very proud to have been included in this great project and to have the opportunity to share my story. 

 I would like to encourage you to take some time to read this publication, as there are some really amazing and inspiring stories of ordinary Canadians living extraordinary lives. I promise you that you will come away feeling uplifted by the resiliency of the human spirit. 

Thank you to MV1 Canada for taking the initiative to create a way to so beautifully illustrate that people can live and more importantly THRIVE with disability. Here's to always living a Life Without Compromise!!

Rare Disease Day 2013

Today is Rare Disease Day, world wide. It's a day to help raise awareness for disease that are life threatening or chronically debilitating, have a low prevalence and are usually incurable. In late November of 2012, I discovered I didn't actually have Multiple Sclerosis, but a rare disease called Neuromyelitis Optica. (Formerly known as Devic's Disease.)  NMO affects 5 in 200,000 people, making me a rare bird. 

Finding out that the MS diagnosis I'd lived with for 5 years, was incorrect was a relief. The relief came from finally making sense of why with all the aggressive treatment I'd had, I could not get into remission. It was also very scary. NMO is much more serious than MS in that the damage happens rapidly during an attack, can result in blindness or paralysis and has the potential to be fatal. I don't dwell on this though-given that I've lived with it for an incredibly long time not knowing and essentially not having the any treatment (the treatments for MS can actually make NMO worse) I feel confidant that I'm not going to keel over any time soon! It helps to know what I am dealing with so I can take the right drugs and treatments to hopefully mitigate further damage, but it doesn't change how I'm living my life. I am still out there pursuing my dreams, just like I've always have. You can't keep an Aries girl down!

I have had the great good fortune to be involved with the education of future health care providers through two programs I volunteer with as a health mentor at UBC. I started working with medical students 4 years ago and that work will continue. MS will always be a part of my story, but now I will also be helping to educating them about NMO. As I've learned through my own experience, awareness is crucial in the medical community. 

A week or so ago, The Guthy-Jackson Foundation, released "How Do We See In the Dark", narrated by Christine Ha, winner of Master Chef 2012, who also has NMO. It's a wonderfully uplifting video talking about the work that is being funded by the foundation world-wide in an effort to unravel the mystery of NMO in order to work towards better treatments and ultimately a cure.

If you've clicked any of the links I've provided in this post, thank you for taking a moment out of your busy day to learn more about NMO. I'd love it if you'd link back to my post, tweet it or like and share it on FB and help me spread the word.

Life Without Compromise

 I received a message this morning from MV-1 Canada that my personal story has been included on a brand new website that was launched this week called Life Without Compromise. 

From January 15th-March 15th, 2013, they are collecting stories, photos and videos about ordinary Canadians living extraordinary lives. The goal is to raise awareness and illustrate the unlimited potential of people living with disability. I am extremely proud and honoured to be included in this project, especially alongside 2012 Paralympic bronze medalist and fellow artist Josh Vander Vies.

I invite you to visit the website, read our stories and be inspired!

Why My Story Matters

 Photo credit: Blusson Spinal Cord Centre

Last week, I went to the Blusson Centre, a beautiful new medical building that houses the UBC spinal cord injury research centre for an orientation for the UBC Health Mentors Program.

Photo credit: Blusson Spinal Cord Centre

Here's a peek of the inside. It's bright, welcoming and totally accessible. I love the architecture.  

I think I mentioned going for an interview to join the program way back in the spring and not long after that, I got an email saying I was accepted. The way this program works is that future health care practitioners are matched with a Health Mentor, who has a chronic illness and/or disability. The program offers the students the opportunity for patient-centered learning through working with their mentor for a period of 16 months and has been accredited as part of their formal education. It includes students from medicine, nursing, dentistry, pharmacy, physical therapy, occupational therapy, dietetics and speech and language pathology & audiology.

On Wednesday night, I finally got to meet the students I will be working with from now until January 2014! I have four lovely young women assigned to me. My students are studying medicine, nursing, dentistry and occupational therapy. We will begin our work together in less than 2 weeks. I got a very positive vibe about how our group is going to mesh. I believe learning is a shared experience I think this is going to be a great one for all of us.

I am really excited about participating in this program. I've been giving interviews to medical students about living with MS through the UBC Faculty of Medicine's program for the last 3 1/2 years, but it's wonderful to have the opportunity to have a greater impact on the future of our health care system. It's easy to sit around complaining about what's wrong with our system, but that's a complete waste of energy. I believe that if you don't choose to become part of the solution, you become a part of the problem. I also feel that if I have to live with this crappy disease, then some good has to come of it. Volunteering as a Health Mentor is part of how I'm making that happen.

Measuring the Impact

Sumi, the Vancouver 2010 

Paralympic Mascot

I have some big news to share: I was invited by Andrea Bundon to guest blog over at AthletesFirst.ca this week. Athletes First is part of Andrea's graduate student research project at the University of British Columbia.

In her own words, "The project explores how the internet can be used by people who share a comment interest (which in this case is disability sport) to discuss topics of concern to them."

I've been following Athletes First for some time now, on the recommendation of Josh Vander Vies, a Paralympian who competes for Canada in Boccia, because as anyone who has read my blog knows, I have a deep and abiding love for the Olympics and Paralympics. (On a side note, you simple have to watch this short documentary about Josh. It speaks so eloquently to the resiliency of the human spirit.)

I have learned so much from reading Andrea's blog. There's always amazing debates about what's posted and it's such delicious food for thought. Often things are brought up that I just hadn't considered and I've found myself more than once thinking differently about something as a result of the conversation that happens there. I love hearing other people's perspectives. I had the pleasure of meeting Andrea in late May.

 Andrea is a long time competitor in rowing and cross country skiing. She has been a ski guide for  visually impaired Paralympic cross-country and biathlon skier Courtney Knight. Last week, when Andrea sent me an email, asking if I might be interested in guest blogging while she's away in the UK attending a conference, I immediately said YES! So...without further ado, here's the link to The 2010 Paralympics: A Personal Legacy.


Thank you Andrea for the opportunity to share my thoughts about the impact the 2010 Paralympics had on my life. With the 2012 Games a mere 8 days away, I am feeling particularly nostalgic about 2010.

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!

You're Invited!

Port Coquitlam, BC: The Rick Hansen Man in Motion 25 Anniversary presents an opportunity to showcase the artistic expression and achievements of artists with disabilities at Leigh Square Community Arts Village from visual art to film and performances, May 10 to June 3. The Rick Hansen Man in Motion Anniversary Tour stops in Port Coquitlam on May 17 and May is also Mental Health Awareness month. 

Often there are many myths that surround disability, both physical and mental and this exhibition offers an opportunity to hear these voices and share talent, stories and inspiration.  Sometimes the impossible can become possible as many of these community artists will show in their work. Featured artists include Lelainia Lloyd, Kevin Priebe, Marney Smithies, Cascadia Society for Social Working artists Fred Collins, Aiden Fisher-Lang, William Skuse and others and New View Society artists Angela Chapman, Marcia Weekes and Mary Jung.

The opening reception will take place on the Rick Hansen Relay Day on May 17 at 4pm with lots of special activities including performances, mini Farmers Market, face painting, bikes, BBQ and much more.

AnonMS

First off, I want to say that opening up a beautiful, brand new book seeing this:

(top right)

And this:

And this:

 between the covers never, ever gets old.

It's an incredible rush, every single time.

My copy of Seth Apter's new book, The Pulse of Mixed Media arrived on Tuesday. I've already read it cover to cover and...well...WOW! I knew it was going to be great, but it far exceeded my expectations. 

The best part for me was combing through to see how many of the artists were personal friends and how many are new to me. I never know who else is contributing to a particular book until I have a copy in my hands, so there's always that element of surprise for me. Seth's book was a delightful mixture of both familiar faces and artists I haven't crossed paths with before.

Here's the original of AnnonMS, which I still haven't gotten around to framing. 

I wanted to talk a little bit about it. 

Seth asked us to create a piece of art that depicted our greatest fear. In all honesty, it takes something pretty significant to scare me. There was really only one thing I could think of talking about, because it poses a real and present danger in my life and that's living with Multiple Sclerosis.

I've talked about MS here on my blog, but only from time to time, mainly because I believe that whatever you give attention to, dictates your intention and I really don't want MS to be the focus of my life, or my blog. The funny thing is that as I go about living my life, I seem to have evolved into what I jokingly refer to as a "closet MS activist". I'm certainly not bucking to be the poster child for MS, but the opportunity to share my experience of this disease (which affects every aspect of my life, including my artistic life ) with others keeps appearing. I feel like if I can use what's happening to me to help someone else, whether through educating future doctors, mentoring a young person living with MS, serving on a city committee to improve accessibility and inclusion for people with disabilities or simply creating a piece of art that speaks to my experience, then it's my responsibility to do so.

I trust Seth implicitly and when he asked, I knew that if I allowed myself to be vulnerable and brutally honest, the work would be received in the spirit with which it was intended. My instincts were right. Seth got it and his editor, Tonya got it. It makes me really happy that I took the risk to stand up and show my soul and that this was the piece they chose for the book. I think that as an artist, it's important to honour not just the good things in my life, but also the things that I struggle with. In order to authentically tell my story, I need to embrace all of it. There's beauty in the truth, even if parts of it are harder to acknowledge. 

How It Is

Way back at the beginning of the year, I signed on for a couple of photo collaborative projects. The two I was interested in weren't happening till the end of the year-one in October and in late December.

The theme of the one that's due at the end of this month is Portals and Gateways. I love old doors, so I really wanted to do this one. The thing is, I had no idea it was going to turn out to be as much work as it was.

So the idea is that each person makes 26 pages, using a 5x7 photo of a door. I shot this one a couple weeks ago, in Chinatown. I love this door. I love the chipping red paint of the walls that flank it, I love the creepy metal grate over the window and most of all, I love the style of the numbers.

 The door is cut to open, the back of the door covered with paper, so you're not looking at a blank white space. Behind the door is another photo, with a quote pertaining to the theme.

I chose to use a layered photo I made from two images also shot in Chinatown-the graffiti number 32 I found in an back lane and a pair of runners tossed over a wire in another back lane.

The quote reads:

"The story of my life is about back doors, side entrances and secret elevators."

It seemed perfect for this project.

On the back we were supposed to put one more image with our contact info. I chose a second door I shot that day in Chinatown. This image has be altered. To the right of the door was (in reality) a window, which made the whole image look off kilter and not very pretty. I finessed it by cloning the brick on the left hand side and putting it up in place of the window. You'd never guess that this isn't how the building really looks in real life, would you? I'm becoming my own architect through the magic of digital editing! All three of these images were work I did in Swan Dive. I've got mad skillz now!

Anyway, it all seems simple enough, except that in order to fabricate 26 of these 5x7 pieces, it required an insane amount of careful cutting, gluing, double sided taping and meticulous matching up of edges. Challenging for anyone, but ridiculously so for me.

You see my hands have deteriorated once again, due to nerve damage in my spinal cord from MS, so doing anything that requires fine motor skills has become extremely difficult once more. It's been hard for a long time now, by by and large since I first lost feeling in my hands 4 years ago, my brain has adapted to the changes. Now, with what seems to be fresh damage, I feel like I am back at square one again.

Yesterday night, I sat for hours applying double sided tape and then trying to find the edges of the paper to peel it off. Then I had to ever-so-carefully line everything up and stick it down. It took forever and it became the project that almost broke me. It was NOT fun. It was like torture and I could not wait to be done. I sat here verging on tears and madness. Imagine trying to peel double sided tape with oven mitts on and you get some vague idea how frustrating it was.

In any case, because I am me and giving up is not in my DNA, I grit my teeth and by sheer force of will, got the job done. I sent them off this afternoon. I'm hoping the payoff is worth it.

Some people do art as a passtime, then there are the diehards.

I may be changed by what happens to me, but I refuse to be reduced by it.