May is MS Awareness Month in Canada. This means it’s been a crazy busy month in terms of advocacy. I am an MS/NMO Ambassador for the BC-Yukon Division of MS Society of Canada. This means that I am invited to attend various events to share my story and talk about the important work the MS Society does.
At the beginning of May, I spoke at Operation Med School at the University of British Columbia. This is an annual day-long conference for grade 12’s and undergraduates who are interested in medicine. I gave four presentations on the MS Society and what it’s like to live with MS and NMO.
I had a hands-on experience that I shared with students to simulate some of the symptoms MS and NMO patients deal with every day. Volunteers were asked to put on one high heeled shoe and one swim flipper and then try to walk a distance. This gave them an idea how hard this is to do when your balance and gait are affected. None of them could walk without holding onto the table for support. When I asked them if they felt they could walk around campus like this for a whole day, all of them said no. I then had volunteers put on a pair of oven mitts and asked them to do simple tasks like undo and tie their shoe laces, undo and do up buttons on their shirts and zip and unzip their jackets. This helped them understand what it is like to have numbness and the loss of small motor skills in their hands, something I live with every day. Finally, I passed around a pair of safety glasses which I altered by painting the lenses with white glue. I asked them to try them on and then attempt to read the NMO pamphlets I’d handed out. This illustrated what it’s like to have optic neuritis.
My second event in May was attending the Port Coquitlam City Council meeting to accept a proclamation for MS Awareness month and to give a short speech. Mayor Greg Moore and the Council members were very kind and welcoming. I had 5 minutes to speak, so I spoke like the wind! I talked about MS, the work the MS Society does, shared my story and invited everyone to the Tri-Cities MS walk. In addition to City Council there were also members of the public in attendance as well as the media, so I made the online edition of the paper the next day.
My final event for this month was to speak on a panel for the UBC Faculty of Medicine. Students from a variety of health disciplines attended and I spoke to two groups for 30 minutes about my experiences living with NMO and about patient-centred care.
May 25th was World MS Day and I was busy all day on social media raising awareness for NMO testing. We had excellent support from the MS Society of Canada as well as a number of my friends in helping spread awareness. The Canadian MS society also made a number of videos on this year’s theme, “Independence”. My friend Peter Schwartz-Lam spoke about something I’d said back in January during the grants review process. He did a beautiful job sharing the spirit of what I’d said. See for yourself:
Last night I received a really lovely thank you email from the BC-Yukon Division of the MS Society. It’s always nice to know your time and energy are appreciated. It’s been a real struggle this month health-wise, but it meant a lot to me to be able to do this work. I am grateful, as always to have had the opportunity to serve.