Going to the beach hits a little different these days. Hear me out. If you know me at all, you know that I would much rather throw a kegger party than a pity party. So there will be none of that here (none of the pity one, I’m totally down for the kegger one). 🙂 … Read more
“I’ll be fine.” A little more than two years ago, as I started down this path, I did so with eyes wide open… or so I thought. While I may not have fully understood the depth of the devastation that lay before me, I acknowledged and accepted the difficult journey and its unfortunate, ultimate end. … Read more
I may be exhausted, but two years later at least I am still here. Today, I remember one of my mantras… celebrate all your victories. Even the small ones. Maybe especially the small ones. The way I look at it, if you do that you’ll have more celebrations and less time in between them. Win/win, … Read more
You can look away, I get it. Scroll on past, I won’t hold it against you. I understand… I mean, that is some pretty ugly stuff. But if you are still here, and if you’re curious, I’ll tell you a little about what’s going on. As you can see, I recently got a really nice … Read more
Funny enough, in retrospect the Terrible Twenties are somewhat like the Terrible Twos – there is that feeling of being invincible, but now with money and without supervision. Good times. And while I had a ton of fun in both my twos and my twenties, you may be disappointed to find out I’m referencing neither … Read more
This may come across as a whiny rant, and it is – to a degree. Sorry, not sorry. It’s my journey, so I can do that. But hopefully, you know me well enough to know that’s not where it’ll end up though, right? 🙂 So hear me out… For what it’s worth, I’m not a … Read more
“I’m tired, Boss” – Big John Coffee, in The Green Mile. Trust me, John, I think I know how you feel. I’m tired, too. I’m tired of hearing about people suffering and dying. I had recently created a list of ALS-related follows on Twitter – patients, caregivers, industry resources – which provided some insight as … Read more
I’ve written previously about winning the reverse lotto. You know, those 50,000-to-1 odds of being diagnosed with what some people call “the cruelest disease “ – ALS. While I somehow punched that ticket, unfortunately I’ve still had no luck on the real Lotto. (And filling in every number didn’t seem to help either. Go figure). … Read more
As the waning days of Fall start to fade, these shorter days foretell the darkness of the Winter that lies ahead. In many ways, at least for me as I battle this cruel and ruthless disease ALS, they all too starkly represent a painful analogy to the realities and challenges that await me. So much … Read more
Not to overstate the obvious, but let’s be real… we’re blessed with whatever time we are given on God’s Green Earth. I’ve said before (and will likely say countless more times) we’re not guaranteed tomorrow. Since my ALS diagnosis 16 months ago, I’ve embraced that belief with all my being. Of note, it should NOT … Read more