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Month: April 2020

Crippled CEO Blog #028: What I Learned in Agony

Once upon a time (around 10 years ago), in a land… right here, actually… I was almost always in terrible, constant, excruciating pain that would sometimes make me double over at random, clenching my jaw to bite down the scream while tears filled my eyes. 

When I would get out of my chair at night, my left leg would stay in the same 90 degree position, like I was still sitting. It wouldn’t straighten anymore. 

The ball of my hip joint had moved slightly outside of the socket, and the corner of that socket was grinding against the bone all the time. Anytime I moved. Or breathed. You could sometimes hear the ba-ba-ba-ba noise of the joint forcing itself over the uneven surface of the other bone. 

It was awful. 

I eventually would have surgery that chopped off that ball of my hip joint entirely. It is much better now.

But while I was enduring that, somehow, I realized something. I was having one of those attacks that I had 50 times per day, the kind that made me suddenly bend over toward that hip, squeezing my eyes shut for a moment. When I opened my eyes and looked up, I saw somebody wincing, trying to deal with a splinter in their finger. And for a second, I was annoyed. How could this person be bothered by a splinter while I was going through this consciousness shattering cacophony of torture? How ridiculous. How selfish of them. Didn’t they know how bad I had it?

We are told to be grateful because other people have it worse. 

“Hey, at least you have a roof over your head. That’s more than many can say.”

“There’s people starving in India.”

“At least you don’t have cancer.”

And while it is true that we should have some perspective about our trivial ass, first world, bullshit problems, it is also important to remember that we are all living our own separate, independent lives, and the severity of our experiences are all relative to what we’ve personally gone through.

And even though I was on the verge of passing out from hip pain that Mengele would have been jealous of, that didn’t make that splinter suck any less for my friend. Somebody having brain cancer doesn’t make your headache any less shitty. Someone losing their husband of 47 years doesn’t make your break up any less sad for you.

Perspective is important. But you don’t need to feel guilty for cursing and hopping around when you stub your toe because somebody, somewhere is getting their foot amputated. That shit hurts. And that comparison won’t make you feel any better.

(Thank you so much for reading! If you like this at all, please share it with your friends. Also, be sure to text the word CRIP to the number 484848 to become a CRIP and get notified as soon as I post the blog each Sunday. You’ll be glad you did.)

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Crippled CEO Blog #027: Today is My Birthday

Today is the annual recognition of my (first) vaginal egress. It’s my birthday (I’m 38). Since my previous birthday plans of going to see a comedian at the Improv have been squashed by the pandemic, a couple days ago, I wrote out my ideal schedule for the day, and then shared it with the people it included. Here it is:

Proposed plan for my birthday (this Sunday):

9:30 AM – 10:30 AM

Getting out of bed with Gizmo 

11:00 AM – 2:00 PM

Personal Reflection / Wondering if I have chest pains/COVID / YouTube / Write the blog /  Interactive Animated Storytelling Content (aka video games)

2:00 PM – 5:00ish PM

Tabletop gaming (Lords of Waterdeep?) with friends who choose to partake, which may include Lauren, Dan, Doscher, Gizmo, and Ryan. 

6:00 PM – 7:00 PM

Seriously. I’m pretty sure I have it. Did I just cough? Is that you, Rona? Let me check the pulse/ox. 

7:00 PM – 10:05 PM

Dinner, Ozark, and Westworld with Kate

1:40 AM – 1:46 AM

Bedtime / sex with one or more people regular people only get to fantasize about  (with masks and proper social distancing)

4:00 AM

I’m dying. This isn’t a panic attack this time. I know it. I’m freaking dying right now.

— 

I was totally honest with myself and decided the above is exactly what I wanted to do today. I used my birthday as permission to do so. And that’s exactly what’s happening. I’m writing this now at 12:37 PM. 

It got me thinking, though. Why aren’t I doing this every day? I pretty much do what I feel like, and don’t do the things I don’t want to do, but why not give myself permission to plan to do whatever my perfect day is, every day? I mean, yeah, I have responsibilities. But, besides going to the doctor or the dentist, I picked those and want to do them, too. 

So, that’s the advice for today. Obviously, life happens, and it won’t always be 100% possible, But let’s try to be honest with ourselves about what we really want to do each day, write that down, let others know, and let’s live every day like it’s our birthday.

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Crippled CEO Blog #026: I Hope I’m Wrong

I used to HATE being wrong. 

Like… really hate it. 

I was known (and for many, I’m sure this is still part of how they perceive me) for always having to be right about everything. 

There were two reasons that I hated being wrong. The first was that I’m competitive. I like winning. And being wrong felt like losing. (It’s not.)

The second reason, and this is likely the bigger one, is that I connected ideas, facts, beliefs, and concepts to my identity and my worth. So, if someone was trying to explain why I was wrong about this thing, I felt like they were attacking ME — that I, as a person, was “wrong.” 

It is easy to connect our ideas, and the things we think we know, to our identity. I am certainly guilty of this. It is the exact reason why people avoid discussing politics and religion.

But at some point, I figured something out. Something flipped inside my brain.

First, I decided, and spent lots of time reminding myself, that my ideas are not tied to my identity. All of my ideas and beliefs are just my best guesses based on everything I know at that moment. And HOPEFULLY, that changes. If I’m doing it right, I’m constantly absorbing new information and perspectives. It’s silly to connect who I am to an idea, because more information on that idea might reveal itself that requires me to change my mind. But I won’t change my mind if I have attached that concept to my identity, which will freeze my ability to improve. 

With that in mind, I realized that it’s FANTASTIC to find out you are wrong. When you discover you are wrong about something, you just got smarter. Your mind just received a software upgrade. You are better than you were before. You didn’t just learn something new. You unlearned something that was incorrect — it’s even better. These days, I am constantly seeking out and hoping to find things I might be wrong about. Because I know that every time I do, it is an enhancement, an improvement, and continual refinement.

The moment you start looking for why you are wrong, and honestly engaging people from that perspective, instead of clinging onto and defending what you think is right, you just unlocked a whole new world of potential. 

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Crippled CEO Blog #025: Ruth A. Lupton • April 5, 1947 – October 8, 2011

Today (April 5, 2020) is my mom’s birthday. Astonishingly, it is the EIGHTH birthday she has had since she passed away. Eight years sounds like such a long time, and on one hand, it does feel like an eternity since she passed away, but on the other, it seems like I was just sitting in the living room with her making fun of someone deserving. 

“Any idiot can walk.”

I don’t know when she first said this to me. I think it was in the late single digits. Maybe I was 10. But I was young. And I don’t remember why she said it. Maybe I was having a moment of weakness, some insecurity about being disabled. But it stuck — clearly; it’s the tag line of this blog. 

“You’re never going to be a roofer. You can’t fix cars. You HAVE to be smart. You have to use your brain.”

Starting very early on, she made it inexplicably clear that I would work, I would be successful, that I was infinitely capable of achieving anything I wanted, but I had to use what I had. And I had to completely discard the things I definitely couldn’t do. And a big part of that was cerebral palsy related, but there was and is a ton I can’t do that has nothing to do with CP, as well. She hammered home that, being disabled and in a wheelchair, my success absolutely hinged on me quadrupling down on all the things smart and intellectual in my wheelhouse that I COULD excel at, and forget the rest. If everyone, able bodied and disabled, could adopt this worldview — focusing on what we can do and discarding everything else — I think we’d all be a lot happier and more productive. 

“If a girl won’t be with a guy just because he is in a wheelchair, you didn’t want that type of person anyway, and you’re lucky you get to find that out upfront. You weed out everyone shallow (and honestly, that’s probably going to be every girl you meet in high school).”

While I think that making the life choice to not be with a disabled person doesn’t necessarily make you a bad person, there is something to be said about accepting that those who don’t want you also aren’t FOR you, and that rejection is good for everyone involved. 

“We keep little feet on solid ground.”

“I want to start a yard maintenance company and call it `Lawn Enforcement’.”

“I want to start a bakery and call it `I Knead Dough’.”

I learned so much about marketing from her, the idea that the look and presentation of a thing matters just as much as what it is. That if you’re going to do something, you should be trying to inject creativity and cleverness everywhere you can. Perception matters.

“Pick your battles.”

“If it won’t matter in five years, it doesn’t matter.”

Arguably the biggest lesson that she drilled home time and time again, through her actions and literally by telling us, was to not sweat the small stuff, to not get stressed out about things that don’t matter, to stay calm while everyone else panics, and so on. It is so easy to get hung up on things that don’t matter, especially since most things don’t matter.

Person A: “The Beatles are so much better than The Rolling Stones.”

Mom: “Absolutely. Way better.”

10 minutes later…

Person B: “ The Rolling Stones are definitely better than the Beatles.“

Mom: “Oh, for sure.”

She didn’t do this about things that she was actually passionate about or things that were actually important, but on topics that really didn’t matter to her, or matter period, she always preferred to maintain what she thought was truly important, the relationship with that person, rather than be correct or convince somebody about something meaningless. I watched her do this over and over again, and I’m still terrible at it. I think I’m getting better, though.

She would simultaneously be enjoying tracking everything going on with this coronavirus, and freaking out about any of us getting it right now. She lived for big events like this. Hurricanes, the O.J. Simpson trial, etc. I think because it brought about the one thing that she valued the most, that brought her the most joy: community, connectedness, and a shared journey. That’s why she loved holidays. That’s why she would agree with you rather than start an argument. That’s why she loved her family. And that’s one of the many reasons why we loved her. 

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