Ask. or browse The Q&A


Burning Questions. Burning Answers to Those Questions.

I sorta do what I want. Plus, I’m unemployable. I sleep 14 hours a day, but am only alert for two. That I accomplish anything is remarkable. Truthfully, I wanted to leave behind a diary of sorts to honor Barry and Jack. Maybe when my kids are grown and bored, they’ll stumble upon this on a rainy day – and smile. Or shake their heads in disgust. Either way.

We spent way too much time together, the 3 of us. High School. College roommates. Fraternity brothers. Lived together in our bachelor days. Even dated some of the same women. I just thought our situation was unusual and wanted to share. A friendship that survived a lot. Barry is gone now, but obviously, his spirit looms large.

I think Barry was at peace with my shenanigans. I didn’t ask, but that’s my guess. The sitch with Jack is a different animal. I know from his Internet searches that he looked up restraining orders on Legal Zoom. Truthfully, both men persevered by being slow to anger. It’s something we can all aspire to. Plus, I’m sincerely apologetic.

Hey, I understand the whole Crapwagon Jack genre isn’t necessarily Jack’s cup of tea. I mean, I get that. At the same time, he has to take some responsibility. Certainly, he knew something like this could happen if I lived long enough. I’m a lot of things, but no one can call me a lazy quitter.

No. Nothing. Especially for normal people. Obviously, I’m far from normal, but the key for anyone is to re-calibrate your expectations. My father-in-law said that and it stuck. It’s a survival mechanism. Find joy where you can. Fortunately, I have incredibly low standards and I’m easily amused. I don’t know what that says about me.

On the whole, advances in technology have been a saving grace. In particular, the power wheelchair and eye-tracking technology that Tobii is always improving. Those two inventions improved life for people with ALS exponentially. When I’m having a hard day, I try to imagine what this sh*t show would have been like 50, or even 20 years ago.

The best technology in the world, however, is no substitute for faith, humor and the love of family. Take away any one of those things and I’m certainly not sitting here, doing this.

I try to think about this often, if only to remind myself that I would be a really lousy caregiver. The question really boils down to, “Would you rather be able to do nothing? Or have to do absolutely everything?” I don’t think there’s a good answer to that question. You play the hand you’re dealt. It’s an awful feeling to be a burden. At the same time, I know I couldn’t do what Dianne does. She is remarkable and surprisingly resilient.

The hardest part is being unable to hug my family, pet our dogs or prune my apple trees. In that order… The most frustrating part is the inability to speak. It’s impossible to talk your way out of a sticky situation. Or to defuse it with a joke. Or to talk Marriott into a free upgrade. On the plus-side, I’ve learned to remain perfectly motionless for up to 12 hours. That’s pretty cool. Sometimes I like to pretend I’m Rambo, laying in wait, covered in mud. For 12 hours.

Embrace is a strong word. Was my humor ever popular? Not really, but I had a lot of Facebook friends with ALS and we shared a lot. There’s an immediate, fraternal bond. After 5 years, however,

Facebook became a depressing place to visit, because 80% of my Facebook friends diagnosed before 2010 were no longer around. That changes a man. I can’t compare it to what Ned Beatty went through in Deliverance, but it’s gotta be right up there.

Today, I’m not even #99 out of the 100 things people with ALS (pALS) and caregivers have on their crap list today. Did someone show up to get them out of bed? Will they get enough calories through their feeding tube? Can they make rent this month with no job? Is there anyone at home to love on them? Or lift them on and off the toilet?

My situation is as good as any, ALS-wise. I’m fully aware all of that can come crashing down in a moment, so I count my blessings and pray a lot. I know it can always be worse. A lot worse.

I think there’s room in ALS-land for a few guys out on an island, raising awareness and cracking a couple jokes. Which is good, because my wife is always talking about her hilarious Facebook friend, Steve Martin. No lie. There’s a funny guy with ALS named Steve Martin. 

In a situation where the person with ALS has a significant size advantage over the caregiver, transferring the patient onto a toilet or shower chair can quickly disintegrate into the scene from The Revenant, when Leo DeCaprio is wrestling the Grizzly. The incident can be traumatizing for caregivers and children of all ages, especially if the bear is nude.

Speaking of nude bears, caregivers used to drive Barry to his Mom’s place to be showered. Apparently, it saved time to transport him in the buff, covered by a blanket. I tried to surprise him one morning by springing open the van’s sliding door. Needless to say, the surprise was on me.

Not having to hear anyone say, “Round here, we work hard and we play hard!” I never understood how you get to a point in your head, where that phrase doesn’t sound too douchey to actually say. You work hard? Okay, I’m ready… Wait. You play hard too? Can’t we just focus on the job? No one cares what you do in your spare time, Tony Robbins. 

I told my daughters, ‘if anyone ever offers up that nugget in the job interview, run.’ It’s code for ‘work like a dog and agree to be sexually harassed at drunken office parties.’ Carlos Mencia should do a bit about that.

Thank you!  You’ve been a great audience. Please remember to tip your waitstaff. Good night.

i'm not a mind reader

inquiries? Questions?