Everyone who has NMO has a different way
of dealing with what’s happened to them. My philosophy is that if I have to have this cruddy disease then I want it to count for something. As human beings, one of the ways we cope with traumatic events in our lives is to try and assign meaning to it-to suss out for ourselves what the purpose of it is so we can heal emotionally and move forward. My way of doing this is to take the things I am good at-teaching, advocating, public speaking, art and writing and use those skills to raise awareness for NMO.
This past week has been super busy. On Wednesday night, I attended the UBC Interprofessional Health Mentors Program Symposium. I volunteer as a health mentor, working with a group of 4 students from a variety of disciplines (which include Audiology, Dentistry, Genetic Counseling, Kinesiology, Medicine, Nursing, Occupational Therapy, Pharmacy, Physical Therapy and Speech-Language Pathology) over the course of 16 months, teaching them about living with chronic illness and/or disability as part of their formal education.
The symposium is a chance for each Health Mentor group to share what they’ve learned so far. There are 50 Mentors and 200 students involved in the program who present at the symposium. Faculty advisors and members of the public also attend. My students did a fantastic job sharing what they’ve learned about NMO and patient-centred and collaborative care. Our board was very busy because of course, no one there outside of my group had ever heard of NMO and they were curious. We handed out a ton of NMO pamphlets from the Guthy-Jackson Foundation.
Saturday afternoon, I was invited to speak at the Vancouver Chapter of the Canadian Association of Neuroscience Nurses conference. My neurologist, who is the only NMO expert in Canada, presented the medical side of NMO and then afterwards, I spoke about my experience. It was really effective to present in this way. Dr. T’s presentation let our audience know just how ugly and serious this disease is. As I was sitting there listening, I was thinking “Maybe I really shouldn’t be hearing all this…” When I spoke about my journey, everyone kept reacting to what I was saying. Mostly, I think they were horrified at what I’d been through. I could tell that they really “got” it.
It’s always really interesting to see what kind of questions people ask afterwards. I find I learn a lot about myself as I am answering. One nurse asked me if there was ever a time where I was in so much pain or so frustrated that I just wanted to end my life and had I’d ever experienced depression. Having been a crisis line counselor for 8 years, I thought this was an excellent question. I love that she had the guts to ask and my honest answer to both questions was no. I have an amazing support system and while there have been times where I’ve felt down, (like after I had my first chemo treatment and was so sick I spent 3 days on the bathroom floor) fortunately I’ve never experienced clinical depression. I took a box of NMO guidebooks and pamphlets to the conference and the nurses quickly snapped them up. The organizer said they would like to keep what was left to share around the hospital, which made me very happy.
The conference offered a unique opportunity for my neurologist to hear my story from my point of view. It gave him a glimpse into how this whole experience has impacted my life and how I feel about it. I know he heard things I’ve never talked about before, mainly due to appointment time constraints and their relevance to what’s currently happening. I think maybe it gave him a better understanding of who I am and what I’ve been through which I think was an amazing gift, really.
Doing this kind of work is so rewarding. Yes, NMO has had a huge impact on my life, but what’s more important is the impact I am having on this disease. Every time I stand up and tell my story, I feel empowered and I know am making a difference. I may be changed by what’s happened to me, but I refuse to be reduced by it.