I’ve spent the last month or so trying to distribute the pamphlets for the upcoming lupus Mad Hatter Walk and Roll here in Portland scheduled for this Saturday, September 27th at Willamette Park beginning 9 a.m. I’ve been to community groups, local businesses, neighborhood centers, schools and churches, public resources like libraries, senior centers, and Chambers of Commerce…I know I haven’t hit everyone or every corner, but I did what I could. To summarize what my efforts these past few weeks have been like, I offer the following phrase: “I don’t know.”
“May we place these pamphlets here in your store/ office/ front desk/ resource counter/ bulletin board/etc…?”
“I don’t know…”
“If you have lupus or know someone with it, why have you or your family/friends not participated in the lupus walks over the years?”
“I don’t know.”
“What would you like to see/ hear/ learn/ have here in the Portland area that might be of assistance to you in living with lupus?”
“I don’t know.”
“Why do you think we don’t hear more about lupus and lupus-related activities/resources here in the Portland-metro media?”
“I don’t know.”
“What do you think your daughter (who has lupus) needs help with the most that you would like to be able to offer her?”
“I don’t know.”
Are you following me, here? Honestly, I don’t know.
I don’t know why my own daughter asked me to give her money so she could participate in the Race for the Cure, but refuses to join me this Saturday for the lupus walk. Perhaps I spent too much time questioning my own place in lupus advocacy.
I don’t know why I received countless smiling nods while I did my spiel about the lupus walk, heard several mention that they knew someone with lupus, then was told that they “couldn’t” or wouldn’t place the pamphlets out for their patrons/patients/clients to consider participating in.
I don’t know if the reason those individuals who participate in the Race for the Cure, yet refuse to support lupus activities is in their assumption that breast cancer is fixable and lupus isn’t.
I don’t know why those with cancer feel like they are a part of a group/community/family/cause and those with lupus feel publicly ashamed. Why do those with cancer seem to feel like they are larger than life and those with lupus seem to act as if life is too large for them?
What I do know is that I, personally, am in awe of what breast cancer advocacy has grown to become – absolutely stunning, clever and strong – because being present is the only way to be recognized. Words, pictures, money, product – all of that comes from the actions of everybody buying, listening, watching, donating and participating. It didn’t happen overnight and it didn’t happen among a group of people saying – “I don’t know“.
I REALLY want to know:
- …what it will take for me personally (and those with lupus collectively) to not feel embarrassed about living ‘the best they can’?
- …why friends, family and the community as a whole still don’t take seriously an illness that affects more than 1.5 million Americans – including a growing number of our military personnel and veterans?
- …why it is so difficult for people who know someone with lupus to take a stand on their behalf?
- …why lupus is receiving a great deal of interest from the U.S. Department of Defense (PRMRP) yet doesn’t get any shout outs from the Portland-Metro media for an ANNUAL lupus fundraising walk?
Most importantly, I want to know why it is up to those who have a hard enough time making it through their days as an employee, parent, neighbor, teacher, soldier, consumer, nurse, citizen, patient, student, child, taxpayer, grandparent, …to do all the leg work in just getting someone to say ~
“I want to know” .
(On the Road to A Cure offers a list of lupus walks coming to several areas within the next couple of days. If you don’t feel compelled to take part in the actual walk, please strongly consider contributing a little towards future research, local educational opportunities, offering your time and energy next year in helping get the word out, make a tax-deductible donation or whatever you can do that will benefit someone you know who has lupus. It honestly doesn’t take much to make a difference~ but it will take a community to change that “I don’t…” to an “I want to know “
