My Bleeding Ink

“Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’…disability is an art. It’s an ingenious way to live.”
~Neil Marcus, 1993

When you’re disabled, you gotta figure out new and different ways to do things in a world that isn’t designed and built for you. That’s just life. Adapt or….well, or nothing, you just adapt. 🤷‍♂️

And when you have an injury and are temporarily more disabled than you already were, you have to come up with even more creative and even different ways to do stuff.

For example let’s say, oh I don’t know, let’s say your knee gives out and you fall on Sunday morning as you took the very first step out of bed. And you go to the urgent care because, given your osteoporosis diagnosis last year, you wanna make sure you didn’t break anything again! Then let’s say that by the grace of all the gods and goddesses, you didn’t break anything, but you sprained “pretty much every tendon and muscle in your inner thigh, and some on the outer thigh.” So then you can’t walk so good. So you figure out you now need a walker.

But that’s nothing compared to the even more important and more vital decisions you have to make, and the more creative ways you have to take care of your wife!

You’re the one who took the literal weeks of sessions to learn to hook and unhook her into the home Peritoneal Dialysis machine every night and every morning. And while she does watch you every night, she hasn’t done this herself ever.

So you panic, flip out, cry, panic some more. Mostly because you know that the last half of putting her on every night, and the entire part where you take her her off every morning, has to be sterile. And you can’t be sterile if you wash your hands but then have to hang on to a walker to get around.

And you pride yourself on the fact that you’ve been doing this every night and every day for almost 6 months without her getting an infection! Maybe it’s because you’re anal as hell about sterility. Or maybe it’s because your learning disabilities made you really, really good at following written instructions step-by-step while not deviating from those written instructions. Maybe it’s because the idea of doing anything that will cause infection and possible removal of the PD catheter and a return to in-clinic dialysis keeps you awake at night. Whatever it is, you have kept her infection free for almost 6 months.

And you know she can’t do this process, at least not all of it, by herself because her balance is still not great, and her left hand is still not as strong as it should be.

So then the first 2 or 3 nights and days, your wonderful mother –who is basically a saint– helps you do things. She masks up, she washes her hands for 2 minutes, she follows your directions, and she becomes invaluable those nights and days. ❤️

But then your mom decides that the vacation she’s been planning for about a year is still happening the next day. Rude. 😂 (I kid, she deserves all the breaks and all the vacations), so then you have to figure it out. Through some trial and error, through some extremely close calls with cross-contamination, (jury’s still out on whether or not Kischa’s ok, but seems just fine so far, so there’s that 🤷‍♂️🤞🤞) through a lotta ideas and help from some lovely and supportive friends that I talked to in the first couple days❤️❤️❤️, I think we got this down finally.

Takes longer, but what’s supposed to be sterile stays sterile. So. Yay.

Also, it’s me. I’m “someone.” I fell down and sprained all the things and can’t really walk without a walker. Enjoy this picture of my swollen left leg.

Here’s to figuring it out. “An ingenious way to live.”

Disabled friends, Spina Bifida or otherwise, besides using adaptive equipment the way it’s meant to be used, what are some creative/unique “ingenious ways to live” that you’ve come up with to make up for a world not designed for you?

TL:DR I really fucked myself up, and my disabled ass is now more disabled, and now I have to be even more creative and come up with an even more “ingenious way to live” at the moment, in order to take care of myself and my wife. 😐🫤

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)