My Friend Michelle

I met her, I believe, at my 2nd SBA conference in 2004. I was immediately comfortable around her. She was kind and funny. Effortlessly funny. And that accent. That stereotypical Chicago accent! She had it and I loved it. She was smart, she was funny, she was just lovely. She was a pillar in our SB community. A strong advocate for kids, but mostly, and understandably, for adults with Spina Bifida. For us to be seen, be listened to. For us to matter. A force for positive change. A strong, independent, disabled woman who moved hundreds of miles away from her family to live alone in Florida, when society thinks “the disabled” aren’t supposed to be able to do that.

As our friendship got stronger, I saw that she was also a fiercely loyal person. Fiercely loyal friend. I will use the word “protective,” she was so protective of our friendship.
I will always be grateful to her for that.❤️

I’ll remember all the inside jokes we had, some shared with our small group, some just between her and I. I’ll remember how pissed she’d get when Dateline would come on, and the victim’s name seemed to always be Michelle!! But boy did she love her murder shows anyway! Forensic Files, Snapped, American Monster. She watched them all. And we’d talk about specific episodes and things they did to hide bodies. She always thought she could do it better.😳

She once said, “It must be the Catholic thing” when we both learned just how many cousins we both had! I have a huge Mexican family, she has a huge Irish family. But we both grew up Catholic. So, she blamed that. 😊

I’ll remember “Dorkin’ up the news feed” as we both tried to keep each other in good spirits when, in 2013, we were both going through some intense medical stuff and were in the hospital for a while. My wife even made some goodies and sent them to Michelle. That’s how “orgasmic brownies” became a thing. (She *really* liked the brownies I guess 🤷‍♂️ 😂)

One of the last things I said to her when she talked about not feeling well, about a week before she so unexpectedly died, was a promise to keep dorkin’ up her feed and make her laugh.
She said she was counting on it.💔

I’m going to miss all the times she’d get playfully angry at me for whatever made-up indiscretion she decided on that day and she’d quote Phoebe from Friends, “I swear to Lucifer, Arroyo, if you ever…..”

And she’d always end her rants with “*fluffs angel wings and walks away*”

******She was just so damn funny!******

I ain’t even mad that she hated pickles! We had plenty of vErY SeRiOUs dIsCuSsiOnS about whether or not pickles were awful. She called them “cucumber soaked in evil.”
She was wrong. Pickles are the best. Obviously. But only dill. Not sweet. Obviously.

And she, like me, hated inspiration porn.”
She’d always mock it, this idea that disabled people exist solely to inspire you or as a lesson for you to be grateful for your own life because “it could be worse. I could be ‘them.'” She’d post Facebook statuses like “Just got back from the grocery store. Like a hero. Ventured out, on my own, bought cat food. I’m so brave.” And we would all be in her comments like “You are the wind beneath my wings!”

SheIsTheReasonIStartedWritingInHashtags!!!! #JustTurningRandomSentencesIntoHashtags That’s how #DamnItFeelsGoodToBeAGangsta became a thing between us!

Man. We stole so many phrases from each other! So many expressions! She’ll be with me every day, “Thank baby Jeebuz.”

She took “Outside is stoopid. Nature is dumb” and “I rolled my eyes so hard I saw my shunt.” And I stole a response she gave one time when I asked how she was doing, and she replied, “Oh ya know. Chillin’. Being awesome.” I say that a lot when my wife texts through out the day. 😊 I also stole that thing where she’d joke that she had “the worst life” when some mild inconvenience happened. She was of course mocking #FirstWorldProblems Her can opener didn’t work? “Why do I have the worst life??” Her soap dispenser was empty? “Why me, why do bad things happen to good people??”
She knew she had it good. She knew life was good. She loved her family, she loved her friends. She loved her pets.

And she loved me. And I loved her.
More specifically “I love your Mexican gutz, Arroyo.”

I love your Irish gutz, Flaherty.”
And I did. And I do.
And I will miss her so much.

Thank you my friend. Thank you for damn near 20 years of love and friendship. “Pourin’ one out for the homies that ain’t here no more.”
I think I’ll go to “the YouTube” and watch “Jesus is a Friend of Mine” and have another good cry as I laugh through the tears.
“Zap!” 💔😂💔😂💔😂💔

Michelle Lynn Flaherty
April 3, 1971 – January 9, 2022

A picture from one of the many SB conferences we attended over the years. I have plenty more. Not ready to go through them yet. 💔 Maybe one day. Watch this space for more pictures. Maybe.

She was a huge Grateful Dead fan. And maybe one day….one day, I’ll be able to listen to her favorite Grateful Dead song again and not start bawling. One day.
Today is not that day. 💔

“There is a road,
no simple highway
Between the dawn and the dark of night
And if you go, no one may follow
That path is for your steps alone”
~Grateful Dead “Ripple”

#ThereMayHaveBeenUglyCryingWhenIHeardItEarlier #OkThereWasUglyCrying #MakingHashtagsOutOfSentencesAgain #ItsHeartbreakingThatShesNotHereToReplyWithHerOwn

#BifLife #ProfessionalPatient #Spoonie #SpinaBifida #Myelomeningocele #ThisIsWhatSpinaBifidaLooksLike #Hydrocephalus #TooMuchBrainToContain #ChiariII #ChronicIllness #TheMidlifeBifLife #IDidntChooseTheBifLifeTheBifLifeChoseMe #BiffinAintEasy #DamnItFeelsGoodToBeAGangsta🤘 #love #friendship #death #loss

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And the Beat Goes On…

“Man up!” “Men don’t cry!” “Therapy is for pansies!” “Nobody wants to hear a dude whine.”

But also:

“I don’t want to bother anyone with my stuff.” “It’s not that bad.” “Could be worse.” “Other people have bigger problems.”

It occurs to me that there are lots of reasons for not talking about our mental health. Reasons. Excuses. Whatever.
Society as a whole has gotten better I think at addressing mental illness. Thank you Chester. But, and I know this is just anecdotal (at least until I do more research and gather some data and write another blog) but at least from what I see, nobody in my world is talking about their depression. Their own anxiety. And I include myself in that. In fact I do just the opposite of reaching out and instead isolate from people even more! How fucked up is that?!?!
We’re in a frickin pandemic….yes, still….and still have some rules in place, especially for those of us with compromised immune systems and other disabilities that put us at higher risk of complications from CoVid. And of course that’s gonna cause some mental health issues. It’s been 18 months since most of us started this social distancing thing, wearing masks, avoiding crowds. How is that not gonna mess with your mind??
And nobody’s talking about it. I mean, maybe to a shrink, but I’m pretty sure most of us are too broke to afford one! So I mean, occasionally someone might be brave enough to reach out on social media (I’m not) or is even braver and texts a friend (I don’t), or is even braver and actually calls a loved one or a friend (I don’t use my phone for that 😐) and that’s good. But I’m willing to bet more often than not, a whole bunch of people lay awake at night, maybe crying maybe not, and just think. Overthink. Their mind races. They’re overwhelmed with the bad thoughts.

“And cue nightly existential crisis in 3….2…..”
Hell it’s 2:30 in the morning right now and I’m up writing this. Wife laying next to me, no idea my insomnia is once again rearing it’s ugly head. And why not?? Wake her up, dumbass. Just wake her up.”

“But I don’t wanna bother her with my stuff. She’s got her own stuff. I don’t wanna bother her with my stuff.”
And the beat goes on…..

#MakeChesterProud #IAmTheChange #320ChangesDirection #SickNotWeak
#TheBloggessTribe #NeverAlone
#MentalIllness #Anxiety
#BeThe1To #ReasonsISpeak
#StopSuicide #AFSP #NSPW #IKeptLiving #PTSDAwareness #YouMatter🤘 #YoureNeeded🤘 #YouRock🤘

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Spina Bifida Awareness Month Continues. And So Do I…..

When I was growing up, I would receive our local SBA newsletter and I would read about how this 12 year old or that 9 year old with SB died suddenly.
That sticks with you.
I never thought I’d live very long. I thought I’d be dead in my teens. I mean, if that 12 year old died, why wouldn’t I? And when that didn’t happen, I thought I’d die by 24. Why 24? Dunno. Why not. Now here I am, 43 and still alive. Albeit with health issues, both SB related and non-SB related. And both physical and mental health issues. But I’m here. So. That’s cool.

And yet, my friends and fellow people with SB continue to die. Kidney failure, compressed lungs from their messed up spines, inhibiting their breathing. Or the infamous pressure sores that they couldn’t feel until they’d get down to bone and caused sepsis and ultimately death. Friend of mine died a couple years ago at 40. A little girl with a family I used to be close to died at 6 because she was dealing with flu and shunt failure simultaneously, and her little body couldn’t take it.

And we’re coming up on a year since one of my best friends and favorite people on this Earth died. Tom Baroch. Dear sweet wonderful kind-hearted Tom. Kicked my ass when I was being dumb, and fiercely loyal and protective when he felt people were being unfair. Was his death SB related? No I suppose not. Not directly anyway. Spina Bifida exacerbated it, but either way 58, a couple months from 59, is way too young in this day and age. Don’t get me wrong, I’m trying to get to 58, and hopefully a decade or two more than that. We’ll see. But it’s sad.

But on the plus side, I know people my age and older, oldest one being 73, who have Spina Bifida and are still well. Quite well, in some cases. All their faculties, still walking around, doing fine.

Don’t really have a point. It’s 1am and not being able to shut my brain off is sorta my thing. Just never know when it’s your time to go I guess. Nobody knows, I get that.

Still. Some days it’s overwhelming knowing the odds have been stacked against you since birth.
*goes back to holding his wife, for which he is grateful.*

#BifLife #BiffinAintEasy #ProfessionalPatient #SpinaBifida #Myelomeningocele #ThisIsWhatSpinaBifidaLooksLike #Hydrocephalus #TooMuchBrainToContain #ChiariII #ChronicIllness #Spoonie #TheMidlifeBifLife #IDidntChooseTheBifLifeTheBifLifeChoseMe #DamnItFeelsGoodToBeAGangsta🤘

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