Saturday, July 23, 2016

Long Time, No Post!

It's been ages since I've update and you're probably wondering if I fell off the face of the earth. Almost. I am hanging on by a thread. I became quite ill just over 9 weeks ago and have been either in bed or off having specialist's appointments, MRIs and blood tests ever since. This week alone I had 6 appointments in 3 days. It's still up in the air what exactly is wrong and how it's going to be treated and no one is more anxious to get this figured out than me, so I can recover and get my life back. This is the worst attack I've ever had, whatever it is and it's been brutal.

 As John Lennon said, "Life is what happens when you are busy making other plans."

Let's talk about other things, shall we?
Okay so here are the things that are rocking my world right now:

Listening To:

Spotify! First of all, why didn't anyone tell me about this!?! You guys have been holding out on me! I am late to the party, but I am loving it. It replaces what was Pandora for Canadians. (I had Pandora years ago till some bright light decided to block it in Canada. We still don't have access.)

My go-to play lists include the wonderful Mandolin Orange. Worth checking out if you enjoy mandolins and folk music. (I love both.)

Little Words
Jump Mountain Blues
 Of Which There Is No Like
Wake Me
 Clover Tune
Haste Make
 Bird of a Feather
Little Worlds

I will be adding more of their music when I get a spare minute because honestly, it's all wonderful. Great tunes to make art to. I listen on an endless loop and never get tired of it.

I also love acoustic guitar and there just happens to be a play list called "Acoustic Guitar Instrumentals" that I've subscribed to. That one is also really good for getting into my creative groove. When my husband heard one of my other play lists that I compiled myself he said "You were meant to be born in the 60's." I laughed. He's right. 60's & 70's music is what I tend to listen to the most. Probably not too surprising, since I was named for a Donovan song.

Artsy Inspiration:

I've known about Brian Andreas' art for some time now, but lately, I've rediscovered it through Instagram. He's been posting such beautiful, uplifting work in the face of all the ugliness that's we've been bombarded with as the world seemingly goes off the rails. If you need a break from all that, I recommend following his feed.  (@brainandreas) It will make you feel better. We need more people like Brain in the world. Love needs to be louder. Let's get LOUDER people!!

Brian posted about this project he's started where you order a print of Help Wanted and he will also send you small packet of 3x3 mini prints to give away, as a way to put some love and inspiration out into the world. When I saw the print, it spoke to me so strongly. It was the perfect way to commemorate my 40th year of volunteering. I totally understand what this magic is he's talking about-when you open up your heart and say "YES!" to the ways in which you can serve, the universe will keep presenting you with amazing opportunities. It's the law of attraction. I have experienced this over and over throughout my life. Volunteering has both enriched and informed my life in countless ways.

Yesterday, I covertly gifted my first mini print to one of my specialists who has been working really hard to advocate for me. I put it on her desk and then just tucked it under a bit of her paperwork so she wouldn't find it till after I was gone. I want to leave one for her receptionist who has been very kind to me too, but I didn't get the chance to leave it secretly yet. Next time, hopefully!

I need to see if I can get my hands on some of Brian's books. I'll have to see if our library system has any of them.

Dawn DeVries Sokol has a new instructor video out via Creativebug. I watched it the other day and I just loved how she not only talked about, but showed all the colours, shapes and textures she encounters in her every day life that inspires what she creates as an artist. The video is so infused with colour and I thought it was a really smart way to share what she does.

Later that day, I had time between appointments, so I popped into the big book store downtown and came across three of Dawn's books on the shelves. I always like to try and get photos of friend's books in the wild. I know if I had a book out there in the world, (someday!) I'd love to see it on shelves in cities far away. I also "face" the books, if they are spine out on the shelf so others will notice them. (Shh! Don't tell! I volunteered in the library growing up, so old habits die hard.) It was nice seeing they had a copy of Artists' Journal Pages, which I have work published in.

I had a $20 gift card which was was a thank you gift for consulting on a study UBC is doing about patients who have participated in the medical grant review process. I didn't expect a thank you, so it was a very nice surprise. After seeing Dawn's video, I was inspired, I treated myself to Year of the Doodle. It's got a sort of zine-like vibe and I think it would be a good thing to keep in my bag to help pass the time when I am sitting in the waiting room for medical appointments. All I need is a pen of some sort and I'm good to go. I'm just going to jump in at this point in the year and carry on. It cost me a whopping 94c after the gift card. That's a deal any way you slice it!


Since I have been stuck in bed for weeks, I've watched a lot of good stuff on my iPad. The list is goes:

Game of Thrones-The last two episodes were jaw dropping. It was more like watching a movie than a tv show and it deserves all kinds of awards. It was absolutely epic. The music, the story lines, the multiple moments of shock. WOW! Tyrion made me cry. He is my absolute favourite because he just tries so hard and there is always that sense of him feeling "less than". The vulnerability of that character played so beautifully by Peter Dinklage tears at my heart. If George R.R. Martin ever kills him off, I'm DONE.

Orange is the New Black-I watched the newest season, but somehow I can't remember parts of the previous season, so I need to go back and review. A few of the story lines had me confused about what came before. The snoring girl cracked me up and all the references to current TV programs were killing me. They made a comment about Monopoly that had me in stitches.

Wentworth-It's like an Aussie version of OITNB, but not funny-it's very dark in the most delicious way. That's all I'm going to say about it. Watch and see.

Wayward Pines-This is a post-apocolyptic series that is filmed right here in Coquitlam and also out in the Fraser Valley. One of the places they film at, Riverview Hospital is a place I drive by regularly. It's a decommissioned mental hospital, which is used in all kinds of TV and movie filming.The driver of the Rick Hansen 25th Anniversary medal bearer van, (whose blog I started following back then and then eventually met) is a driver (teamster) on Wayward Pines. He's been blogging about the series here. (There's a bunch of posts.) The premise of this show is interesting, especially in season one where they have you wondering what's really going on. M. Knight Shyamalan is the producer.

Alone: Seasons 1&2 were filmed on the northwest end of Vancouver Island. The premise is they drop 10 people off, each on an isolated beach with film equipment and they have to survive and film at the same time. There are bears, cougars and wolves. There is also weather. Weather is always a factor in Canadal The last one wins half a million dollars. Season 1 was hilarious-the whole time people are complaining about the rain. People! You are in a temperate rain forest in the late fall. Of course it rains. I guess no one told them. They really should have named it "BC Weather Kicks Butt"! 

The Last Alaskans-This is filmed up in the northeastern corner of Alaska on a wildlife reserve where there are only a handfull of families whose cabins have been grandfathered in until the current owners last child dies. The people are really interesting.

Port Protection-Another Alaska series about a remote port where the community members rely on one another. 

Bering Sea Gold-Mostly guys and one woman prospecting for gold on the sea out of Nome, Alaska. I watch to see how someone is almost going to kill themselves every episode. It's pretty silly.

Life Below Zero-Yet another Alaskan series set in Northern Alaska. (Are you sensing a theme here?) Everyone lives off the grid and subsistence hunts. There is an Inuit family on the show and I enjoy seeing how they are passing down their traditions to their children. The girls are all learning how to hunt and trap. It's really cool that this young girls will have survival skills most of us will never have. 

The Amazing Race Canada-Because I love TAR and the Canadian version is just as good. Plus it's hosted by Jon Montgomery, 2010 Olympic Gold medallist in Skeleton and a fellow Manitoban.

Master Chef (US version)-Because Gordon Ramsey amuses me and I've watched every season since it started. I am glad the grumpy chef isn't on there anymore. 

 I haven't watched too many movies in the last while-I just don't have the energy to stay awake for them at the moment, but I did see Concussion which was unbelievably good. I will never watch football or any contact sport the same way again. It explains a lot about how much brain damage athletes are suffering and many of them don't even know it. It sure opened my eyes. Well worth watching. (I rented it via iTunes.) I have rent The Witch and I need to watch that one in the next couple of days. A couple friends have seen it and enjoyed it. I love creepy movies!

Tomorrow my best friend and I are going to see a new Viggo Mortenson movie, Captain Fantastic. It will be good to get out for a bit for sanity's sake, hang out with my bestie and of course eat popcorn! It looks like a really great movie. 


Reading has been tough. I am having both blurry and double vision from side effects of the medications I am on, so most of the time, it's pretty impossible. I have small windows of time where I can manage. Right now in the queue on my bedside table are Robert Dugoni's In the Clearing and Linda Castillio's Among the Wicked. I am hoping to be able to make my way through both of them before they are due back at the library. The last pile I had, I had to return unread. I've put them back on my Goodreads "want to read" list so I don't forget about them. 

A number of people have suggested audio books, which I am authorized for at my local library, but to me, reading is an active, not a passive thing. My brain likes to read, not to be read to. I did try it out the last time this happened and I find sometimes the person narrating can be really annoying, which is distracting. In a perfect world, Harrison Ford, Morgan Freeman, John Corbett, Jeffery Dean Morgan would narrate books for me. (Harrison Ford would always be my first choice!)

Okay, I think that's it for now. I have art to share-yes, I've actually been working on some art when I've felt up to it and doing some photography in my travels.
I'll save that for my next post. 

Wednesday, April 13, 2016

A Major Milestone

I had planned to write a post about National Volunteer Week on Monday, but ironically, I was busy volunteering that day. Really! I spent the day out at UBC having my 6th blood draw for the CIRCLES study for NMO and having a brain MRI for a study on NMO and cognition. I do these things because they are important and relatively easy ways that I can help researchers and clinicians learn more about NMO and hopefully find a cure for this devastating disease.

I wanted to post about National Volunteer Week because this year marks an important milestone in my life:

I have officially been volunteering for 40 years! 

Yes, you read that right. When I was just 5 years old, I began volunteering by visit a fragile senior in my neighbourhood. She was living with angina which had made her both house bound and bedridden. She and her husband were lovely people. I visited her a couple times a week for 10 years until I moved to the west coast. We bonded over our love of art, (she was a gifted artist) writing, reading and poetry. She introduced me to The Group of Seven and thanks to her, I fell in love with the work of Emily Carr. I learned at a very young age that I was happiest and my best self when I was helping others and so my life evolved into one of continual service. When you find what makes you happiest, you want to keep on doing it.

My volunteer resume is extensive and diverse. I have given of my time to all kinds of causes and events that I felt passionate about. Through all my varied experiences, I have developed skills I wouldn't otherwise have and learned a lot about myself and what I am capable of, often surprising myself. For example, who knew I could effectively manage a fleet of 30 vehicles and drivers for VIP transportation for major sporting events? I didn't! I walked in the door, sat down and BOOM! I was in charge. I just did it and because I am really good at multitasking and organising, things ran smoothly. I walked away from that experience pretty proud of myself and then went on to run dispatch for three more events. I loved the challenge.

Over the years, volunteering has given me the opportunity to interact with a huge cross section of society. I've worked with children, seniors, people with physical and developmental disabilities, people in crisis, future health care providers, various boards and advisory committees, city council, politicians, tourists, Olympic and Paralympic athletes, professional sports figures, festival and events committees, medical researchers and clinicians, radio and television hosts and so on. I have learned something from every single person I have crossed paths with in the last 40 years. I've made some of my closest friends through volunteering. My best friend Lisa and I met through the crisis line. When we first met, we took an instant dislike to one another, which, in her words meant "We were destined to become friends." We were both elected as Volunteer Representatives and as we worked together, we got to know and respect one another. We've been best friends ever since.

I have always believed that volunteering is the rent we pay as citizens of this planet. The beautiful thing about giving is that the more you give, the more you get to keep for yourself-my life has been blessed and informed in countless ways through service. Rick Hansen gave some great advice about volunteering. I am paraphrasing, but essentially he said we should find the thing we are passionate about and then do it with all our might. I couldn't agree more! Choose opportunities to do the things you love, because then you will be giving from a place of happiness and joy. I promise you, it will change your life. 

Tuesday, April 05, 2016

Rocket Man

Saturday night I got to experience something really special. My friend Isabel invited me to the symphony and it wasn't just any symphony, but the VSO with CMDR Chris Hadfield! Being a huge fan of space exploration and this exceptional Canadian astronaut as well, I jumped at the chance.

I have to say this goes down as one of the most amazing experiences of my life. First of all, there was the music. Having lived with a hearing impairment my entire life, when I listen to music, it's very one dimensional to me. The Orpheum where the concert was played was built for sound so it felt like I was enveloped in the music. Usually I am all about the strings, but the epic scores they were playing really made the percussionists shine. I was fascinated by the endless variety of sounds they could produce. I couldn't take my eyes off them!

The highlight for me was hearing John Williams' score for the closing credits of Star Wars: The Force Awakens. His music is unmistakable in the way he layers sound and hearing that piece performed by classically trained musicians was incredible. My other favourite piece of the night was something I'd never heard before, but instantly fell in love with Holst's The Planets: Jupiter. Such a gorgeous piece! They paired it with photographs from outer space that were projected onto two big screens. It was really cool. Here's a link to a sampling of it. (The Chicago Symphony Orchestra is performing this version.)

CMDR Hadfield performed a number of songs from his album, including I.S.S. (Is Somebody Singing) which is my personal favourite. It was originally recorded with The Barenaked Ladies. Here's the video:


At one point, he was singing a new song, Beyond the Terror and I was sitting there thinking "Why is he singing about terrorists? That's a little harsh." The next day I was reading through my program guide and saw the song was"Beyond the Terra". Uh...yeah...okay that makes more sense! This is what happens when you have a hearing impairment. Fun times! 

CDMR Hadfield also performed David Bowie's Space Oddity. He talked about the emails he exchanged with Bowie leading up to the video and cover he did while aboard the International Space Station. He said that Bowie expressed such joy that this song he'd written about how he imagined space travel to be was being recorded in the very place he he'd written about. CMDR Hadfield said it meant so much to know that he'd given Bowie joy in the final weeks of his life, when no one knew he was dying. Very poignant.

The UBC Opera Ensemble performed a piece from Star Wars: The Phantom Menace that was super creepy and dark. It was pretty powerful. I had no idea that UBC had an opera ensemble.

I had such a good time with Isabel and I feel so lucky to have seen this concert. It allowed me to cross two things off my life list-1. To hear CMDR Hadfield play live and 2. To hear John Williams' music played live by a symphony. Two things I will treasure forever. THANK YOU Isabel!!

Monday, March 21, 2016

Things I Am Diggin'

Gratuitous photo of a palm tree from my trip to LA. 
I am kinda diggin' shooting trees on this funky angle.

Other things I am diggin':

-I'm signing up this morning to take Roxanne's class as a birthday gift to me. If you're not familiar with her work, you seriously need to check it out. It reminds me of NYC graffiti, which is probably why I like it so much. I am intrigued by her use of black and I'm looking forward to adding to my mixed media layer-making knowledge. Playing with paint makes me happy. Signup begins at 8 am PST. Can't wait!

-Tim Horton's frozen lemonade. It's the perfect blend of cold and tart.

-Starbuck's almond croissants. YUM! They did away with the almond tart, which was my favourite, so this is the next best thing.

-My new Onyx stainless steel bento box from Delish General Store. The container actually holds (for me) enough food for both a lunch and a snack. I love how compact it is and it's a great way to practise self-care on days when I am having to spend a lot of time at the hospital. It saves me sugar crashing and getting a whopper of a headache.

-The new Atom Egoyan movie, Remember starring the brilliant Christoper Plummer. So, so good. (You can rent it for $5 via iTunes.)

-This song, Say Something by Great Big World & Christina Aguilera.

-Jonathan Kellerman's latest novel, Breakdown, which I just finished. He's far and away my favourite writer. I started reading his Alex Delaware series back in 1997. It's a crime serial and if you've never read any of his books, I recommend starting from the beginning- there are 31 books in the series and they are *so* worth it!

-Star magnolias! They are blooming here in now and they are my favourite thing about spring in western Canada...well that and all the cherry trees that are also blossoming. Vancouver is so pretty in the spring.

Thursday, March 10, 2016

And So It Is Done

This humbling letter just arrived in my inbox:

Dear Lelainia,

We would like to acknowledge the tremendous contribution you have made to the health professional programs at the University of British Columbia through your role as a member of the Office of the Vice-Provost Health Patient Advisory Group. We have been privileged to work with you in the development of curriculum for the health and human service programs. Over the past two years, you have shared both your valuable time and personal experiences in order to improve the education of health professional students, expecting nothing in return.

Your role on this advisory group has helped ensure student education is patient-centred and relevant. Your contribution to the Certificate in Collaborative Practice for Health Professionals and the Integrated Ethics Curriculum, among other initiatives, will impact health professional students for years to come.These programs are being used with health professionals from a wide range of disciplines and have the potential to change the way health care is delivered in the future.

We look forward to working with you in the future through the Patient and Community Partnerships for Education and other initiatives.

Louise Nasmith
Associate-Provost Health
Office of the Vice Provost Health
The University of British Columbia

Victoria Wood
Curriculum Manager
Office of the Vice Provost Health
The University of British Columbia


Tuesday afternoon, we wrapped up the work we were doing on this advisory committee. I am kind of stunned to realize that was 2 years of work together. It didn't feel like it-that's how much I enjoyed working with this advisory and the faculty. I am still doing advisory work, (in fact, I am heading back to UBC for to a dinner meeting in a couple of hours) but the certificate in collaborate practice and iEthics work has been completed.

It has been such an honour to do this work with individuals who are so deeply committed to improving health care education in British Columbia. I have learned so much from each of them and I believe that I received in equal measure to what I gave. I am just so grateful to have been invited to join them at the table and to have been able to collaborate and create with them. 

 I too look forward to whatever's coming next.

Monday, March 07, 2016

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.

Friday, February 26, 2016

New Ink!!

So...this happened yesterday afternoon! It was my Xmas gift from my son. I have been thinking about a third tattoo for some time now and yesterday I finally did it.

The design is a stylised ampersand. I love the symbol being the font/typography enthusiast that I am, but didn't want to have the same tattoo that a zillion other people are walking around with. I came across this particular design and fell in love. I did some digging and managed to track down the artist, Beth Sicheneder. I sent her an email to see if she would give me permission to use her design and she very generously gave me her blessing.

I want to pause a moment to say that it is NEVER okay to help yourself to another artist's work for anything. You must ALWAYS seek permission and if you can't get in touch with them or they say no, then you must respect that. It's the right thing to do. Personally, I believe in karma and I want to keep mine good!

Anyway, on Sunday, I went for a consult at Adrenaline, the shop where I've had all my ink done. I chose Ashley Castaner to be my tattoo artist because I'd seen some of the geometric work she's done in her portfolio and knew she was skilled at doing clean, crisp lines, which is what this piece called for. In my mind, I knew that I did not want this done in black ink with thick heavy lines. I just don't think being as fair as I am, it would look good. I wanted it to be subtler and more feminine. Ashley understood exactly what I meant and suggested we use a tiny needle and dark grey ink. We had a plan!

The actual inking took about 45 minutes. The first 10 minutes is always torture-my brain was basically hollering at me "Ouch! Make it stop!!" Once we got past those first 10 minutes, it realised it wasn't stopping and the needle just became mildly annoying. (Keep in mind I have no feeling in my arms and hands because of the damage to my spinal cord, but when I get a simple paper cut on my finger, my brain thinks my finger has been chopped off. Fun! I knew it was going to hurt, but I also knew I could withstand 45 minutes of inking.)

After it was done, Ashley put a clear dressing on it called "second skin". She said they use that now so people can see through it. The old bandages were gauze and people would keep peeling it up to show off their new tattoos, risking infection in the first 24 hours. (Silly people!) I took it off this morning, as per my after care instructions and it's on its way to healing nicely. (As you can see in the large photo on the right.) Right now it feels like a bad sunburn, but that sensation will fade as the day progresses. My guess is it's going to heal pretty quickly.

I love everything about this piece. I couldn't have imagined something that symbolises more perfectly life on the west coast-the trees, the mountains, the ocean, campfires, the wind, moon and stars. It also contains the four elements-earth, wind, fire and water. Beth calls this design "Campersand" and I am absolutely THRILLED to have it for all time. Every time I look at it, it makes me smile.

So thank you to my son for the lovely gift,
thank you to Beth for such a beautiful (and meaningful to me) design
and thank you to Ashley for making it happen exactly as I'd imagined.