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!

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 

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!!

29 Days of Magic

I'm gearing up for another fabulous course with Vivienne, which starts in a matter of days! I am so excited about Montage, which is about working with video and stills to tell your own story. I'm a little nervous because this is a bit outside my comfort zone, but I'm excited to learn new things. The desire to learn new things always trumps the nervousness though, thankfully!

Meanwhile, I've been working on a few more photographs. The one above was taken at Burnaby Village Museum. I loved the look of the prices poking up inside an old cash register. I took this one while I was there for the End of Day Celebration. Once upon a time, I was a volunteer tour guide there while visiting BC on summer vacation. It was fun because I got to dress up in 1920's costumes every day for a month and teach people from around the world about local history.

This shot comes from the Downtown East Side. Vivienne recently held a class at Opus (a local art store) on double exposures and I discovered the lane ways nearby were full of graffiti. You'll remember me saying that my new benchmark for true friendship is that a real friend will say "YES!" when you say "Let's go shoot in a filthy alleyway." Curiosity also trumps trepidation.

May has been such a crazy month. I feel like I've lived 1000 lifetimes in the span of the last 29 days. Seth commented the other day that I must feel changed. Yes, in many ways I do. I'm still processing everything I learned and thinking about the important stuff. Really, it was almost too much goodness to take in at once.  

Yesterday was also a wonderful day. I had the pleasure of meeting Andrea Bundon, who is a PHD student at UBC. She launched a blog about disability and sport, called Athletes First some time ago, as part of her research. I've been following along, learning alot from the posts and people's responses and I've commented myself from time to time. Andrea asked me if I would be willing to do an interview with her about the my participation on her blog and what my thoughts were on a number of topics related to disability and spot. I was happy to help.

It turns out she's an incredibly interesting and lovely person and I had a great time having a very thoughtful discussion with her. It's always wonderful when you connect with other kindred spirits! (She's also a prairie girl!) I came away feeling like I'd learned so much and I'm excited to see where her research takes her. Andrea has kindly invited me to do a guest post at some point and I'm really excited about that!

Funnily enough, my day wasn't over after Andrea and I talked for 2 hours. Tiina, who is working the the MS Society's local chapter contacted me last week asking if I would be willing to do an interview. They want to feature me as a member of distinction on the MS Society website. So...there was two more hours of interesting conversation with Tiina who is also lovely. It was wonderful spending time with her.

I feel deeply grateful for everything that has happened in my life in the last 29 days. At times, I feel kind of emotional about it. Like I said, it's been alot to take in and I'm still processing. It will be good to turn inward for the next while and work on Montage. I think the timing is perfect.

Challenging the Myths: Disability & Art Opening

This morning, I'm backtracking to Thursday, May 17th, to the opening of the gallery show. This is the beautiful gallery at Leigh Square where the exhibit was held. The official opening coincided with the Rick Hansen Relay making a quick whistle stop in the square.

I love when galleries put a huge decal on the wall with the show info.  I don't really know why, I just do.

My artwork ended up being displayed in a large glass cabinet, as you first come in the door. Mine are the pieces framed in black. I'm not sure who the small painting belonged to. The gallery has a ton of windows, so there was alot of glass and light, which when combined did not make for great photos. Reflections were inevitable.

These are the work of William Skuse. He had alot of work in the show, all similar and yet different from one another. What I love about his work is the geometric patterns he comes up with, combined with the use of colour. He does his pieces using a humble set of markers. It reminds me of those giant posters they used to make in the 70's with wild pictures you'd colour in. I love that his work reminded me of this.

This is my favourite piece in the whole show. It belongs to Fred Collins. Sadly, this photo does not do it justice. Let me see if I can explain it a bit. What I believe he's done is start with a wash of water colours on water colour paper. Once it dried completely, I think he went over the base layer with a fine tip black marker, drawing meandering lines which were no more than 1/8 inch apart. The lines are very wabi-sabi and intersect randomly. Once he'd covered the entire piece with lines he want back and added bits of additional colour using markers. It clearly took some time to create this piece-it measures 22 x 29 inches and it's extremely intricate.

The show runs till June 10th, so there's still time to see it. There are 12 artists with a diversity of artistic talent being featured. If you missed the article in the Tri-City news, it's here.

I just wanted to say a heartfelt THANK YOU to all my friends and family who took time out of their busy week to come and see the show. I appreciate the support. You guys are THE BEST!

EDIT: This just in!

Late last night, our local newspaper was left on my doorstep. I just this minute looked at it and imagine my surprise when I saw myself in the paper! (Bottom left!) Twice in less than a week! WOW!

Save The Dates!

Happy May! I can't believe were already into the 5th month of the year already! I've dubbed May the month o'many things. My calendar is chock full of amazing events. Here's what's happening:

May 3rd, (two days from now!) Seth Apter is here from NYC for his book launch party. I've posted about it here.

May 15th & 16th, The Sketchbook Project is coming to Vancouver. Details are here. (Scroll down to find the info for Vancouver.) I posted a sneak peek at my Sketchbook here, if you're curious.

May 17th is the opening reception for the Challenging the Myths: Disability & Art exhibit at Leigh Square. Info for that is here.

May 18th is my turn in the Rick Hansen 25th Anniversary Relay! I'm a Difference Maker! I posted a bit about it here, though I am still waiting for a specific time and location. Update to follow soon!

Consider this my personal invitation to YOU to come join the fun!

 If you plan to attend any or all of these events, shoot me a note in the comments or by email, so I will know to look for you!

Challenging the Myths: Disability & Art

I am really pleased to announce that my photographic work has been accepted in an upcoming show, Challenging the Myths: Disability & Art at the Leigh Square Community Arts Village, in Port Coquitlam, BC. This show celebrates the Rick Hansen Man in Motion 25th Anniversary by featuring the artistic expression and achievement of artists with disabilities, through visual art, film and performances.

It will be my first gallery show in Canada as well as the first time I've shown my photographic work so I'm really excited. (And a bit nervous!) Making the decision about what images I wanted to submit for consideration was really hard, but I went with what felt right and I think it's a good representation of the work I've been doing over the last 14 months. Now I just have to have prints made and get them framed!

The show will run May 10th to June 11th, 2012.  

The Opening Reception will be on Thursday May 17th, from 4-6 p.m. 

Address: #1100-2253 Leigh Square Place, Port Coquitlam, BC

(Located behind City Hall on Shaughnessy St. & McAlliser.)

Hours of Operation:

Mon, Wed & Fri -9:30 am to 7 pm

Tue & Thurs -9:30 am to 8 pm

Sat & Sun -12:00 pm-4 pm

I hope that if you're local, you'll drop by and see the show.

A big THANK YOU to my friend Jennifer Skillen for giving me the head's up about this exhibit and encouraging me to take the leap. I love you for it!

The month of May is going to be an absolute whirlwind of really wonderful events!