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!!

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.

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.

On The *Really* Small Screen

(Filming at UBC in early October, 2014)

Twice this year, I did some filming for a new medical course that has been in development at the University of British Columbia called the Certificate in Collaborative Practice for Health Professionals . This new course is designed to help health care professionals strengthen communication and collaboration skills in order to enhance patient-centred care. I have been serving on an advisory committee that has been helping in the development of this certificate course, along with several of my fellow Health Mentors over the last year. The work has been both challenging and interesting. What I’ve loved best about it is that I know that the work we are doing is going to have a very positive impact on how health care is delivered in our province. 

Yesterday afternoon, I received an email from the project manager that the video component of the course is finally finished and available for me to view online. While I can't show you the videos, I can share a couple screen shots!

In this module, I talk about some of the aspects of my patient experience and the impact those experiences have had. I had the opportunity to acknowledge what an amazing family doctor I have by sharing how she makes a difference in my life by the way in which she delivers care. When it comes to be patient-focused, she sets the bar exceptionally high. I am extremely lucky to have her as part of my care team.

In this second screen shot, you'll notice I've got new glasses and a new haircut. (This section was shot in early October.) In this module, I am talking about my views on leadership within my health care team. Who the health care team thinks is the leader and who the patient believes it to be can be two very different things.

I think it's so sweet how they have the little orange circle on the screen that says "Learn more about our Lelainia". It's clickable and when you click it, up comes a brief bio:

This course is currently available across British Columbia and I've been told that at some point, it may expand beyond provincial borders. I can't tell you what a tremendous privilege it's been to be a part of the team helping to develop this certificate program. I am incredibly proud of the work we have done so far, but we're not done yet! The work continues with our focus shifting to ethics. Again, very important and interesting conversations are happening. I am learning so much, even as I am lending my own thoughts and experiences to the process. 

When I was watching the finished video clips, I was getting teary just thinking about how this is going to change lives. Advocacy is something I am incredibly passionate about and it just gives me so much pleasure to be able to use my knowledge and skills in such a meaningful way.