Googled a website today that was instrumental in helping ME survive my daughter’s illness, 8 years ago. My last couple attempts to log in were met with failure so I thought I’d see if I could figure out what was going on. Google sent me to a list of articles and restaurants (?) and, surprisingly, a blog written by the founder of another organization that set me back years during the recovery stage of my daughter’s illness.. Weird.
Long story short, and I think I have written about it on this blog somewhere, I was asked to become a board member of an organization working in the field of my daughters illness. Asked after MANY long conversations and emails. The founding Exec. Director was stepping down and I applied, on a whim. Im one of those people who wants to pay it forward, and since we had been helped by so many when our daughter was struggling, I thought this might be the opportunity to step it up and be a force. WRONG. So, anyway, we talked and talked and talked. They ultimately chose another applicant, but called to ask me to take on another role, sort of a face for the organization. Someone who could speak with parents, the press, the former exec., the new exec. Great gig, right? WRONG.
My husband and I planned on making the trip to DC for their National Conference, I bought a new suit — took a day off work and drove down. After signing in, with a wonderful lady who knew my name and seemed excited to see me, I wandered around for about a half hour, introducing myself, unsure of what or where my place was — feeling like I had stumbled into a Sorority Mixer that I wasn’t really invited to. Finally the new Exec. Director approached and told me “don’t introduce yourself as a board member, the members are getting offended.” Huh? “There are people on the board who don’t know about this decision, people who have worked with us for a while, who are unhappy, trying to figure out who you are.” HUH? Wouldn’t the business meeting the night before have been a good time to tell them about me or the role you had in mind for me?
Needless to say, this did not end well. We stayed the day, listened to the self congratulatory speeches about all the organization had accomplished, watched the new Exec. Director be introduced — Couldn’t get out of there fast enough. I remember my husband’s face as he tried to gauge my disappointment, tried to say the right thing. I had been “removed” , belittled and dismissed by people that I thought shared my vision, people I wanted to work alongside. His proclamation? “You don’t need them, bunch of stuck up women”. Gotta love him.
Which leads me back to where this post began. Google led me to a blog entry, written by the former Exec. about another website set up to help people suffering from this illness, and their families. Very similar initiative. The former Exec. had been ‘removed” from this site for a difference of opinion, belief, whatever. Years ago. Apparently her removal was the impetus for starting the new organization. Apparently she feels the former site was detrimental, archaic and giving bad information. Maybe, I don’t know. I don’t think so. The former site had, truly, given me solace and comfort when my daughter was suffering. I could turn to the site and post my feelings, my fears, my challenges, our triumphs. I didn’t fixate on the ads or the promos, didn’t see this organization as promoting themselves as experts, just purveyors of information for you to analyze yourself — I needed moms and dads, brothers and sisters, to listen to, react to and empathize with what we were going through. That is what I got there. No preaching. No “our way or the highway”.
So in her blog she ranted about the horrors of the site and demanded it be taken down or revamped. Sometime in the period of her writing the blog and the time I found the entry, the site had, indeed, been taken down. Because of her feelings? Because of her blog? Doubtful, but who knows. On that former site I had shared information with parents. People had contacted me, comforted me — given me advice and led me to resources that , I believe, helped our family survive.
And yet, the other site couldn’t stand the presence of their existence. Ironic, right?. She described her hurt at being removed from the original site, the pain it caused. I offer up, as a comparison, the pain this group of women caused me when they dismissed me , revoked their offer to work ( for free, obviously) with them. They missed out on something good. Im good at this, this advocacy gig. I am working to better the lives of women, to eliminate racism, to promote health and joy and empowerment. Your loss, dude. look in the mirror.
You just never know what’s gonna pop up when you hit “search’