Doctors said I would not make it past 2yrs old. Ventilator-dependent. Attorney by training. Resilience trainer.
Hey Everybody,
When I was a kid, a doctor described me as being on a “sinking ship.” Pretty sure that’s where ‘donk’ really originated. 😀
The truth is he saw a statistic, not a person. Most people understand disability through inspirational news stories or fictional portrayals of old narratives. So I want to share whatever interests people in a way that is valuable and accurate.
Let me set the scene: I have a neuromuscular condition that affects every voluntary muscle in the body. I’ve been ventilator-dependent for 15 years. I have been nourished through a feeding tube for 32 years. I can move two fingers on each hand, but I’ll never win the Thumb Wrestling Olympics.
If you saw me in a poker room, you’d probably think “Stephen Hawking’s cousin,” not “Itzhak Perlman.”
I earned two degrees, made it through law school, passed the bar, and then my health forced a major pivot. Adaptation became the job. That eventually led me to study resilience seriously and build a resilience training practice for dedicated poker players.
Poker grabbed me 20+ years ago because it’s mentally rigorous and brutally honest: you don’t get certainty, you get decisions - and then an outcome that may not cooperate.
That’s what I’m most interested in exploring here: how to maintain your standards when probabilities don’t pan out.
Ask me anything about downswings and the identity stuff that comes with them, pressure, fatigue, and how decision quality changes late-session, burnout, enjoyment, and staying in the game long-term, or “mental game” as training not fluff.
I’m also open to questions about my life with a disability, being ventilator dependent, relying on a feeding tube for 32 years, and other related topics. I’m happy to talk about lived experience, mindset, constraints, work, relationships, what helps me function day to day, and my stint as an underwear model (a joke for reading this far!). But I’m not a clinician or a healthcare policy wonk. I’ll skip anything that feels too personal, too speculative, or gives off freak-show-ish vibes.
Fire away.
4 Replies
Thanks for starting this.
What's mobility like for you? Are you able to go where you want, when you want?
Thanks for starting this.
What's mobility like for you? Are you able to go where you want, when you want?
I saw your AMA, among others, and thought I'd give it a go!
Getting out and about is basically possible* but requires some extra planning and preparation. I need support staff and typically have two respiratory therapists with me when I leave the house. So there is some effort that goes into aligning schedules and whatnot. I have a couple of big duffle bags full of supplies that we throw in the van. Years ago, having a portable source of electricity with sufficient capacity was one of the biggest limiting factors, but now solar generators have pretty much made that a non issue. In the past few months, I've gone on dates and played live poker. Some of my favorite trips were to SF, Napa, and Lake Tahoe.
*Air travel is notoriously difficult for wheelchair users and something I never attempted.
Do you play at the Bike? If so, I might have played you a few times, would remember you as being a solid player that I coolered once AA over AK.
Do you play at the Bike? If so, I might have played you a few times, would remember you as being a solid player that I coolered once AA over AK.
Don't cooler quadriplegics. I'm pretty sure there's a whole chapter on that in the Super System. 😀
No. I've never played at the Bike, and in anticipation of your next question, I skipped the money laundering course in law school. #codedoug
