Wednesday, April 11, 2018

Well Hello 2018! 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!

Sunday, December 31, 2017

Farewell 2017!

It's been a tough year in many ways, which is why I let blogging fall by the wayside. I've been struggling with my health (again...still...) and I lost someone very dear to me, which broke my heart. I just felt I didn't have much to say that was useful and maybe that's a good thing. Sometimes it's better to just embrace the quiet. Introspection can be good self-care.

The last hours of 2017 are winding down. I'm off to dinner with my love to celebrate the 28th anniversary of our first date. I am grateful for whatever impulse grabbed me 28 years ago when I was home sick with a bad cold to say yes when he asked if I'd like to go with him to a hockey game which was starting in less than an hour. I took 5 minutes to throw some warm clothes on (I'd answered the door in my PJ's) and drag a brush through my hair and somehow we managed to make it in time. Four months later, we were engaged and six months after that, we were married. Our life together has never been boring and while life has had it's ups and downs, we have been happily rock solid through it all. This seems worthy of celebrating. We're headed to our favourite Chinese place.

I am still waiting for a word to pop into my head for 2018, but I've had a concept floating around in the back of my mind. I just have to figure out how I want to express it. I'll have to chew on it some more. I know I will figure it out.

January is shaping up to be a busy month. I just sat down to get everything on the calendar today and it's clear I'm going to hit the ground running. Tomorrow will be one last day of savouring the holidays though, before I need to dive in. We've planned a quiet day of home relaxing and that suits me just fine.

So..if you are reading this, thanks for popping by. My intention is to resume blogging in 2018. I wish you Bonne Annee! Happy New Year! wherever you are in the world. My hope is that 2018 is a kinder, gentler year for us all. May it be so.

Monday, September 11, 2017

Keeping My Promise

Honouring the memory of Kenneth Charles Ledee, lost in WTC II, September 11, 2001.

Wednesday, August 16, 2017

The Universal Declaration Of Human Rights Quilt Project

Hello again! I am back. I've taken a good chunk of 2017 off due to illness and most recently the loss of someone very dear to me. Today seemed like a good day to jump back in and share a new project with you.

Back in late May/early June, Tal Fitzpatrick & Stephanie Dunlap put a call out for an international collaborative craftivism project aimed at highlighting the Universal Declaration of Human Rights and bringing awareness to the ways in which it is being violated around the world today.

I knew immediately I wanted to participate in this endeavour. It's not the first time I have taken up needle and thread and created something to share with the world like this. 15 years ago, I participated in the United in Memory Quilt Project to memorialise those lost on 9/11 and it changed my life.

It took me about 3 weeks to complete my block for the UDHR project. I knew it would be challenging stitching with hands I can't feel (imagine stitching with a pair of oven mitts on and you'll have some idea what it's like) but I didn't realise the impact my vision would also have. Let's just say this piece is likely my last stitchery project and given the level of difficulty, a true labour of love.

I chose to work on Article 25. This is how it reads:

(1) Everyone has the right to a standard of living adequate for the health and well-being of themself and of their family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond their control.

(2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.

*Note: On my block, part 2 of the article is in French to reflect Canada's two official languages. The text reads as follows: "La maternité et l'enfance ont droit à une aide et à une assistance spéciales. Tous les enfants, qu'ils soient nés dans le mariage ou hors mariage, jouissent de la même protection sociale."

This is the story behind my block, which will help you to understand why I chose Article 25 and the inspiration behind the design.

"Like all Canadians, with the exception of the First Nations People of our country, I am descended from immigrants. My people came to this country I imagine, for a better life for themselves and their children. As I read the words of Article 25, I couldn’t help but think of my great grandfather, Einar Nowell and his life-long struggle with his health, which in turn led to struggling to support his family.

Grandpa Nowell was a baker by trade. He worked for the Pauline Chambers Company, one of Winnipeg’s largest suppliers of baked goods. Unfortunately, over time, he developed a severe allergy to wheat. The more he worked, the sicker he became until he had to stop working. This left him with no means to support his wife and 6 children, save for going on what was then referred to as “relief”, which is now known as public assistance or welfare. After being away from the allergy inducing environment of the bakery for a few months, he would start to recover. Once he was well enough, he would return to work until he became too ill from his allergy to continue and the cycle would start all over again.

My grandmother, who was the eldest child told me stories about how desperately poor her family was. A small can of Libby’s spaghetti was expected to feed her entire family of 8. When she was in school, her lunch consisted of a lard sandwich-which is exactly what it sounds like-two pieces of bread with lard slathered on it. Once I asked her what presents she got for Xmas growing up. The only gift she ever remembers getting was a pencil and a hanky.

Eventually it became impossible for Grandpa Nowell to continue on at the bakery. Around this time, the government was giving farm land to people who were on relief, with the idea that they could work the land and provide for their families. Grandpa Nowell moved the family to Anola, Manitoba, 24 km east of Winnipeg. He worked the farm for years. When my grandmother was 17, she moved to Winnipeg for a job at the grain exchange and sent most of money she earned home to her parents help support the family.

On the morning of Feb 15, 1971, Grandpa Nowell told Granny that he had a feeling that the kids were going to come home that day, so he was going to go plow the drive to clear the snow. About an hour after he’d gone out, Granny looked out the window and saw him leaning over on the tractor. She went to see what was wrong and discovered he’d died of a heart attack. His premonition turned out to be correct; his children did come home that day. He left this world 5 weeks before I came into it, missing the birth of his first great grandchild whom he was so excited to meet. I am named in memory of him.

The artwork on my block is in honour of Great Grandpa Nowell. The photograph is of him and my Great Granny and four of their six children.( My Grandmother, Verna is the tallest one in the middle of the back row.) The button is for my Great Granny, who was a seamstress and the piece of measuring tape is from the 1940’s and belonged to my Grandmother Verna. The scrap of paper underneath the photo reads in part “removes of ill-health”, which I thought was fitting. The house is made from a scrap of cardboard, to represent poverty.

In many countries around the world, there is absolutely NO social safety net and for those that do have one, it’s often woefully inadequate. The simple truth is that poverty kills and no country is immune."


There are going to be 4 quilts, each containing all 30 of the Articles. Each block has been designed and created by one of 120+ artists from over 23 countries around the globe who have a story to tell. This is mine.

It's been very comforting, especially given the current political climate to know that there are so many artists who care about what's happening in the world and are doing what they do best to help raise awareness and bring healing. I am especially touched by my fellow artists who live with chronic illness and disability who are participating. There is strength in numbers and I feel the love and solidarity in everyone's work. I know the completed quilts will be incredible.

To learn more about the UDHR Quilt Project, please visit Tal Fitzpartick's website here. You can see many of the blocks in progress and also those that have been completed on Instagram by searching #UDHRquiltproject & #UDHRquilt 

Friday, June 16, 2017

In Memory

One of the finest men I have ever known is being laid to rest today.
The world will be less without him.

Carlos Daniel Ledee
August 11, 1934-June 12, 2017

You do not go alone; a piece of my heart goes with you.

Thursday, January 05, 2017

Simplifying 2017

So in my last post, I mentioned that I'd chosen the word simplify as my word for 2017. I thought I would share a bit about why.

Almost 2 years ago, we moved, downsizing from a three bedroom house to a one bedroom condo. We cut our living space by about two thirds. Before we moved, I went through each room and purged things we no longer needed-some was sold off at a garage sale, a ton was donated to charity, some was re-homed with our son and then there was a small bit that was actual garbage. The idea was to not move anything that we didn't need or want.

Even though I eliminated a ton of stuff, once we moved, there was still a considerable amount of things that ended up in our small in-suite storage room (which is essentially just a small narrow closet with a few shelves) and in the two double closets in our bedroom and the front hall. After a year, I decided to go through the boxes in the storage room because I hadn't opened a single one the entire year and I was beginning to question if we did in fact need anything in those boxes badly enough to keep storing them. In that purge, I managed to eliminate 6 additional boxes of random stuff.

So here I am, two years later and still feeling like I could free myself of more stuff. And let me tell you, it really is freedom. I have less stuff to dust and take care of. My home is neater and more organised. I spend less time looking for the things I need because almost everything is where it needs to be. That said, there are still boxes in all the closets, most of which I think I can now let go of.

It's been an interesting process. I am certainly far more mindful of bringing anything new into my home and when I do, I make sure that if it's replacing something, that I remove the old item immediately. I don't have a ton of nick knacks now either-I hated dusting them all when we lived in the house but I didn't have a choice because I have allergies. That's not to say I don't have a few, but I am far more selective about it. This has allowed space to display actual art that either I've created or have been given to me by artist friends, which I love.

Another thing that I worked on over the fall was creating a capsule wardrobe. Essentially it's a small collection of clothes that mix and match and serve your life better. I always hated opening my closet and having to sift through clothes I didn't like for whatever reason, clothes that needed repair or that didn't go with anything else. It took me awhile, but my capsule wardrobe is almost complete for the colder seasons. I will have some work to do in the summer, but it should be minimal. I might sound a bit of an odd exercise, but doing this has gotten rid of the daily stress of thinking I don't have anything to wear. I can reach in and pull out an outfit immediately, without having to give it much thought. I'm a busy person, so this is a win in my book. 

My capsule wardrobe isn't expensive or fancy-I built it around what works for my life. Here's a quick run down:

-Jeans (blue, black)
-Dress pants (black)
-yoga pants
-capris (black, grey)

-T-shirts (in a variety of colours, mostly v-neck, short, 3/4 & long sleeved)
-Tank tops (for summer)
-Dress shirts (a couple for wearing over t-shirts & tank tops)
-Cardigans (one dressy, one casual)

-Runners (2 pair, in 2 colours)
-hiking shoes
-rain boots
-winter boots

-winter coat
-rain coat
-polar fleece jacket

-Scarves (The accessorising kind!)

That's it! As I said, I will have to add a few things in the summer, but not much. I don't have dresses or high heels because I would never wear them. At some point, I do want to add a blazer, but I haven't found one I like yet. If you're interested in the idea of a capsule wardrobe, do a search on Pinterest-there are tons of articles about them. I recommend thinking about what your day to day life really looks like and choosing pieces based on what you know you'll wear. Go through your closet before you shop and get rid of clothes that are worn out, stained, badly out of style, (like say a neon crop top-if you have that hiding in your closet, BURN IT!! The 80's are gone and no one ever looked good in that anyway!) and things that just don't fit and don't make you feel good when you wear them. Once you've done that, you will be able to see where the holes are in your wardrobe and can shop accordingly. It's helpful to make a list of what you have and what you need.

I am also working on purging my studio. I did a big purge last spring, but I still feel like I need to weed out a bit more. My biggest weakness is ephemera. I confess I am a paper hoarder. I have several small boxes of ephemera and while those boxes are small, do I really need several? I want to make a concerted effort to use up some of the contents of those boxes in the near future and then limit myself to a single large box. If I'm going to do that, then I will need to make a bunch of journals! I'd better get my sewing machine set up!

Recently, I downloaded an app called "Any List" to my phone and I love it! I am a list maker from way back and it's helping me keep track of my grocery list, but you can use it to make (and share!) lists for just about anything. It remembers the grocery items I've entered before, so once a list is populated, you can call it up and just cross of anything you don't need each week. As I am shopping, I can tap on each item I put in my cart and it disappears from my list. Super helpful!

So there are just a few ways I am simplifying my life in 2017. I've been looking at the things that are challenging or stressful and figuring out how I can make them less so. Like anything, it's a work in progress, but for me, minimalism is really my way of practising self-care. 

Did you choose a word for 2017? I'd love to hear all about it!

Friday, December 30, 2016

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:


-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.


-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.)


-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.


-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.


-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.


-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.


-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.


-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 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.