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.

Wednesday, February 10, 2016

Tending My Life

The View From Here

Hello!  I realise it's been awhile since I last posted. This has been the longest hiatus I've ever taken from my personal blog since it's inception 11 1/2 years ago. By way of explanation, I've been busy tending my life. Sometimes you just have to step away from the computer. It wasn't planned-it just sort of happened and obviously, I needed a break.

The Clinical & Population Health Committee 2016

So what have I been up to? Well three weeks ago, I flew out to Toronto to do medical grant reviews for the MS Society of Canada. I was assigned to the Clinical and Population Health committee. You can read more about that here and here. The work, as always was deeply satisfying and I am a bit sad to have it come to an end. (Community Reps can only serve for a maximum of 2 terms.) I learned so much about MS research and the grant review process. It was a gift to have the opportunity to serve in this way and I am grateful.


It was -14C (not taking into account the wind chill factor) the whole time I was there, so it was pretty freakin' cold. That didn't stop me from wandering the city in search of graffiti on my last morning there though. I had a great time just wandering the streets on my own and photographing as I went. It's one of my most favourite things to do in any city. I was thrilled to discover the TORONTO sign from the 2015 PanAm and ParaPanAm Games was just a block from my hotel. Of course I had to go do a selfie there!

Vivienne posing so we can practice shooting people.

Since I've been home from Toronto, I took a class (Which I won! YAY!) with Vivienne McMaster at Camp Tech on taking better photos using your iPhone. It was a great class-I met some really nice people and I felt like I instantly improved my skills.

Here are a couple shots I was especially happy with:

I also won a spot in an online class with Tara Leaver called Practical Intuition: Make Your Own Oracle Cards

This is the deck I have been working on so far. I made cards from my Gelli prints. I cut 48 cards so far, no two alike. Now I just have to decide my next move. It's been interesting seeing everyone's decks as they progress.

Aside from all that, I have been busy with the Health Mentors program. I am in the middle of my 4th cohort now. I am also getting ready to head to LA for NMO Patient Day in early March. I look forward to hearing what's new in the world of NMO research and connecting with my fellow NMO peeps. 

So...I think that about catches things up for now!