When You Don’t Feel Advocatey

Posted on November 12, 2024 by My Bleeding Ink

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)

Posted in Disability Advocacy, My Life (or "More About Me Than You Ever Wanted to Know") | Leave a comment

My Big Brother

Posted on July 17, 2024 by My Bleeding Ink

I have been called many things. “A big sally.” “Sap.” Too emotional. Been accused of thinking way too much. Of worrying too much. Of being too touchy feely. Of being essentially a big wuss. And I’ve been called all this stuff and accused of all this stuff mostly by the other guy in these pictures.

He’s been making these faces for literal years 😊

My big brother.

The first person, who wasn’t my parents, who stood up for me. My first protector, my first tormentor (but if anybody else so much as said a harsh word to me when we were kids, he put them in their place!)

And I’ve been “sneak attack” hugging him for just as many years


The guy who stood behind me and would grab the back of my neck as we walked, just to make sure I wouldn’t get lost in the sea of people, or fall down because of my crappy sense of balance. The guy who admitted once, and only once, how hard it was to see me in and out of hospitals and surgeries and talked about just how painful it was seeing it back in the day. (And I’m pretty sure there was alcohol involved in that confession.🤷‍♂️)

And even tho our hair keeps getting grayer and grayer…

But that’s him. Not a sap. Not emotional. Not a wuss. Not touchy feely and huggy. So my polar opposite. 😁 Every time I attack him with hugs, he makes faces like in all these pictures, like he just hates it and is trying to find somewhere else to be!

I’ll never stop because there’s something very comforting in knowing….

And dammit if he ain’t a great guy. He’s the guy who called my mom pretty much every day when, in 2013, I was once again going through shunt surgeries for the first time since 1996. Two surgeries in 6 weeks. Always calling, always checking in, showed up too, but called a lot. Or when I slipped and broke my knee a few years ago, or when I slipped and fractured vertebrae in my back last year. (I slip a lot, the older I get apparently! 😂😂😂….🫤)

that I’m pretty sure he secretly
would miss it…

But that’s him. He’s a hard working father, the guy works his ass off to provide for his family. He’s a good husband, a kind and decent man at heart. And a wonderful, gulp, grandpa!!! 😳😳😳

if I ever stopped.

And he’s the greatest big brother in the world.

Because when it matters, when it’s not fun and games, he never fails to show up, never fails to be there when it’s important. Him and my mom were the first friendly faces I saw, shortly past midnight on the worst day of my life. You hope your mom will be there, but for your brother to take a plane ride halfway across the country too, that’s “extra mile” stuff right there kids. ❤️

And truth is….

And I hope he thinks I’ve been there when it mattered and that he knows I’ll always be there no matter what happens.
I love you bro. ❤️😊

that we’d both miss it if I ever stopped doing this, or if he ever smiled for a picture ❤️
Just kidding. He smiles. But the other ones imprint in a special part of my soul. ❤️
(And are, y’know, funnier. 🤷‍♂️😊)
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An(other) Open Letter to My Mom

Posted on July 16, 2024 by My Bleeding Ink

So today I wanna talk about my mom. Sort of an updated entry to this. Maybe not “updated” as much as more specific.

Today I wanna talk about the kind of mom she is to my wife. As you all know, Kischa’s had a rough year.

And my mom loves her so much. She’s always checking in, always asking how she feels on any given day. Always thinking about her.

But it’s more than words. She’ll make dishes Kischa enjoys and can eat. Kischa has several restrictions on her because of both “the renal diet” and because she developed a dairy intolerance in the last year for whatever reason. So “Mami” will make some low phosphorous, low potassium, low salt, dairy free things for Kischa.

It’s pretty cute actually. 😊

Often you’ll find my mom on TikTok following this chef or that chef, playing the video over and over, making things Kischa can eat. Happily and gladly, because, “I dunno, Kischa liked it.🤷‍♂️☺️” Sometimes I’ll joke after Kischa eats 2 bowls of something my mom made and I’ll say to her, “Well there ya go, you can expect this dinner a couple more times in the next month, because you said you liked it, until she finds a new recipe from a new TikTok chef! 🤣”

A few days ago my mom came to her with a memory foam, “back rest pillow” -a pillow I never knew existed, that has a back rest, and arm rests- and said “I saw this the other day at Target and thought you’d like it.😊”
She knows Kischa gets really tired after dialysis days, daily pt, and whatever other activity happens. And a lot of times Kischa will sit in bed with pillows behind her so she’s not always laying down (and raising risk of pneumonia and more muscle atrophy, and all the other things that can happen if you lay in bed too long.)

Then there’s the shirt my mom bought her, a little black T, that simply says “I’m so glad you’re here.” ❤️

Mami saw this shirt and just wanted to remind Kischa on her bad days that her life and continued existence has value and meaning

So my mom saw the things, thought Kischa would like the things, and bought her the things. ❤️

She helps Kischa in and out of places with stairs when I’m carrying her dialysis bag or am otherwise unable to. She’ll stay awake and help me make sure Kischa’s blood sugar comes back up when it sometimes inexplicably drops at 3am.

So I could go on and on about all the stuff she does for Kischa, but my point here isn’t “Hey look at all the stuff my mom does for Kischa.”

My point is about my mom’s capacity to love. My mom’s heart. My mom’s capacity for love and her kindness and her giving nature. Her patience and her hope that people she loves, in this case Kischa, will heal and get better.

She loves Kischa as her own daughter. Not because “she’s married to my son.” But because she’s Kischa. She’s Kischa “and she needs help right now and she’s my daughter and I love her.”

They are blessed to have each other, and I’m blessed to bear daily witness to it. ❤️

(And who knows, maybe one day Mami will buy me one of those fancy-pants pillows for Christmas or my birthday or something.
But probably not. 🤣🤣🤣🤷‍♂️)

It’s reflexive. It’s in Mami’s DNA to do what she can when those she loves are vulnerable, weak, and need love and support
Posted in Kischa's Journey, My Life (or "More About Me Than You Ever Wanted to Know") | Tagged , , , , , , , | 2 Comments