So October is over. #SpinaBifidaAwarenessMonth came and went. And I did the things. I posted the things. “Bringing awareness” and all that. Linked to to this thing.

But boy I wasn’t feelin’ it. Haven’t been for a while. And I wanna see if I can’t flesh it out here…..

….My friend Michelle Filippi-Robb said what I had been thinking for a couple years. Please read the screen shot below. She talks about being an advocate for our community, but how difficult that’s been, and she perfectly got *why* it’s been difficult. I have absolutely felt that way since our friend Michelle Flaherty died.

I used to be quite the loud advocate. Even after conferences stopped being a thing in my life, I’d post all kinds of stuff. I’d talk to people about it. In real life, online, anybody that showed a modicum of interest. Hell, was only about 4 years ago that I wrote my “Everything You Ever Wanted To Know About Spina Bifida” blog that I’m proud to say has been shared all over the world.

I was a loud advocate.

But then my friend Tom died. And it crushed me. And then my friend Flaherty died. And it crushed me again. Crushed me to lose such huge advocates, crushed me even more to lose some of my best friends. People I was so close to. In the case of Michelle Flaherty, someone I communicated with in one form or another literally, not figuratively, every single damn day until about a week before she died, when she stopped communicating with anybody except her family.

And I felt, maybe still feel… I didn’t know what I felt…. Until Michelle Robb wrote the words you see below. She wrote what my heart had been feelings for a while.

Essentially…. “Whats the point?”

Someone as smart and strong and educated in SB as Michelle Flaherty, someone who knew what to look for with regards to her health, someone who went to the doctor when she was supposed to……and she can just….die, just like that from CoVid (and other SB related things that on their own could also have been deadly, but we’ll never know.) Its no wonder Michelle Robb doesn’t advocate as much as she used to. It’s disheartening. It’s depressing and disillusioning.

Also in my particular case, the politics of if all. The fact that some of the higher ups in the community would be just fine if they never heard from me again….and it’s all just so discouraging.

Don’t get me wrong, I don’t need the people in charge to feel any kind of way about me so that I could advocate for my people.

But…man… it sure would be easier to advocate for people when those in charge let you comment on their advocatey posts on social media!

I mean who knows, maybe someone might benefit from an answer my almost 50 year old ass gives to a question about living with this thing. 🤷‍♂️

So I’m still wrestling with how best to help my community and my people. Do my own thing, reach the smaller group of people I can reach, just go with that. Or if I even want to do that. I mean, “you can help future generations” and all that. My brain understands that. My heart just finds it hard to care. At least today, I find it hard to care.

Thank you to Michelle for her words to some stuff that I’ve maybe been too afraid to flesh out for a while….. 😐

My entry was inspired by this status from a bestie (posted with permission)