awareness

Next weekend, I am making the trip to Halifax and have decided to do the HRM MS Walk while I'm there. 

I've recruited Nance, yellowfoot, and possibly one of my many relatives in the area to join me for the walk. [Sidebar: I asked her if she wanted to meet up for a beer while I'm in town and then did a switcharoo and asked if she wanted to walk 7 km instead. My bad. I hear cold beverages are refreshing after walks.] 

In preparation for the event, I shot up my fundraising flare yesterday and am nearly at my goal! I have 9 days to get the remaining $45, so fingers crossed! I have a fantastic support system and they/you definitely come through for me for this cause. I get all teary and overwhelmed when people donate on my behalf. I hope you guys know how appreciated your gestures are. See? Teary.

May month comes with a lot of MS thinkery for me. Campaigns are cleverly tagged with mottos about "raising awareness" because it's become gauche to say "raising money" even though fundraising is the major player in organized events. What does it mean to raise awareness? I have MS. What awareness am I working on?

As I'm writing this, my friend Brian got me closer to my end fundraising goal. I haven't spoken to him in person in over a year. Yesterday Mary donated, and I'm fairly certain we haven't spoken face-to-face since the mid 90s. My point? If I put my face out there publicly as "someone with MS" great people like this get extended the opportunity to help us. We are humanizing MS. Showing the world that people with MS cover all walks of life. Hiding MS is no longer an option. To get the help we need, we need to shine the light on that patch of darkness.

This kind of personal awareness helps create and maintain support initiatives and educational programs on the community level, not just find research. By connecting real faces - our faces - with the disease we raise the level of compassion and understanding among those in the non-MS population. Those people volunteer and become the backing we need to work on employment measures, caregiver support and an endless list of other services that are desperately needed. 

I can say for sure based on my work with an MS forum, that not everyone with MS wants to be known as someone with MS. Some see public blogs and fundraising as putting the focus on the disease rather than the person. There may be some truth in that, but I'm pretty sure my friends and family still see me as a real person and not just a walking creature of demyelination. For me, this is my way of saying that I have MS and people with MS are real people who don't always have the means to advocate for themselves. I don't think I'm doing anything selfish or all that courageous here. I just want change and sitting on my ass and doing nothing gets me nowhere. 

Even if I stumble, I'm still moving forward.