I can’t tell you how many times I’ve heard those words. “Wait, you have a brother? I thought you were maybe an only child or something.” I don’t talk about my brother much, but it’s not because I don’t love him, and it’s not because I’m ashamed of him. It’s not like he’s American Taliban, or a Bronie or something. I don’t talk about him and what happened because it’s usually not super pleasant for me, and it often ends up devastating someone who was just trying to make small talk.

The worst is when someone is just meeting me, and we’re still in the small talk phase. They’ll often ask “so, do you have any brothers or sisters?” I’m usually blindsided, even though I probably shouldn’t be, so I end up being either really vague or really blunt. “I do have a brother. Well, I did. He was a super cool dude but he died in 2009, after like twenty years of being a ventilator-dependent quadriplegic. Can you pass the chips?”

I’ll see this look come over the person’s face, and I know they feel terrible for asking a completely innocuous question, which in turn makes me feel like an asshole since I was the one that dropped the grief grenade on the conversation. I mean I’ve been trying to unpack my feelings about this stuff for like a quarter century and I’m still not quite there, so I always feel terrible for the person who’s only had 25 seconds to process it.

That said, I do think Dan’s story deserves to be told, if only as therapy for me. He was an amazing guy with a well of strength in him I don’t think most people ever have to dip into, and he inspired my family to do things they never would have otherwise. Plus, if you’re still with me this far into this monstrosity of a blog post, I figure you probably deserve some of the juicy details I don’t include in my cocktail party carpet bombings. It’s all still a jumble in my head, so don’t worry – I’ll stick to the Cliff’s Notes version for now, and if I write more I promise I won’t force you to read it.

Twenty five years ago this coming December 23, as I was going to bed I heard a loud thump from downstairs. I decided to investigate and found Dan sprawled out on our dining room floor, almost unresponsive – the only thing he could tell me was that he was on his way to the bathroom and his legs stopped working. I carried him to the bathroom and woke our parents, who called an ambulance immediately. When I got back downstairs to Dan he’d fallen off the toilet because the paralysis was spreading from his legs to the rest of him.

He went into a coma as my parents drove him to the hospital that night, and woke up two days later (Christmas Day, if you’re not into counting for yourself), completely coherent but paralyzed from the eyes down. Our Christmas miracle. They never quite figured out what happened, but the prevailing theory was spinal meningitis that caused his brain to swell against his brainpan, causing irreversible damage.

Over the following years he made amazing progress in terms of strengthening his body, temporarily weaning off the vent, and generally not letting things get him down that much. Somewhere along the way, however, decades of ventilator dependence, botched surgeries and the general wear and tear of being bedridden took their toll on him.

Six years ago today, my family decided to remove Dan from life support after he slipped into another coma and it didn’t look like he was coming back. I was instrumental in this decision, letting Dan know in some of his final lucid moments that no one was going to hold it against him if he decided enough was just about enough. Not long after that conversation, he was comatose, and I never got to speak to him again.

I also helped my parents wrestle with the decisions they had the make, and in my darkest moments it sits on my chest like the weight of a thousand dying suns* that I somehow orchestrated my brother’s death without giving him time to come back to us. My brain-brain says we did the only thing we could, but sometimes my heart-brain wonders, just a little bit, if we shouldn’t have given him some more time. But I also know, in my heart-heart, that if I did make a mistake Dan is the kind of guy who would forgive me, which makes the ache a little less achey.

* I originally had a typo here saying “a thousand dying sons,” which seemed appropriate.

Dan's Obituary Pic

Dan’s Obituary Pic