I got the call late Friday night that we had lost another ALS warrior. That’s four in 2 years. I am so utterly exhausted from getting these calls and attending these wakes. I’m sad and angry and frustrated and just done with all the loss. No matter how much progress is made, we’re losing too many amazing people in the interim. It’s fucking infuriating.
I didn’t know Tara well. But I didn’t have to. Truth is, there’s a connection, a bond, especially from shared experiences, and most especially from shared painful experiences. We both heard those fateful words from our doctors, “I’m sorry, you have ALS.” That’s all we needed to connect us on some visceral level. We’re human, and those shared experiences, the ones which we sometimes feel will consume us, are necessary for our very survival. No one can exist in a vacuum. Though I’ll be god-damned if I haven’t tried to do just that recently. It’s no way to live.
I didn’t sleep well Friday. I had planned to get up early on Saturday to meet Ashley and Gerard in Boston to watch the US play in the World Cup. Well, that’s not entirely true. I really had no intention of watching soccer. Aaron was interested in the soccer; I just wanted to be out. I wanted to be out with people, away from the silence and the intrusive thoughts. Crawling into bed after the conversation about Tara the night before, I thought it would be good to be up and out early, and even to start imbibing before noon. The distraction of soccer and early morning wine would be a good way to beat the inevitable descent to the punch. A shock to the system before my mind had time to decide that staying in bed was the better option and I’d lose another day because time is stupid and once you stay in bed a beat longer than you should, all of a sudden it’s dark out and the day is gone and maybe you’ll try again tomorrow.
So that was the plan. But an Aristotelian confluence of events prevented that from happening. Not really. It was much less Aristotelian than I’m making it out to be, but my description is much less poetic. Late Friday night, after an evening of wallowing in the sadness of Tara’s loss and drinking a bit of wine, I awoke with a headache that I thought necessitated some medicinal intervention. So I made my way to the bathroom around 5 AM to retrieve some Tylenol in the hopes of getting a couple of hours of sleep before we needed to be up to make our way into the city. I got the Tylenol and stood at the sink to swallow the pills down with some water. But before I was even able to toss the two pills down my throat, I lost my footing and felt myself heading for the ground. As I Iost the battle with gravity, I smashed my head against the drawer I’d neglected to close when I’d retrieved the pills from the bottle. There was a sharp thud as my head hit the drawer and my body crumbled quickly to the ground. My left arm, hanging limply from my body, folded under me and actually saved me from falling all the way down. Which was great, except that the force of my body falling against my left arm, wedged against the wall, slammed my ribs against my elbow and caused me to lose all the wind in my lungs. So that was a bit uncomfortable. I must’ve hit a particularly sensitive spot on my face because blood poured down from a cut next to my nose and I could taste it as I tried to get myself up to assess the damage. It turned out to look worse than it was. A cut to the left of my nose and some fairly instantaneous swelling of my left cheek. More of a nuisance than anything. And a definite bruise to the ego. But nothing catastrophic and nothing a little ice wouldn’t help.
So there was that. And on top of it, we ended up getting an early morning text from Bender, one of our friends who’d planned on accompanying us that morning to watch the game. His mother-in-law had experienced a medical emergency early that morning and they were up at the hospital with her. That pretty much solidified it for us that a trip into the city wasn’t happening. So I crawled back into bed and figured, fuck it, the universe has spoken.
I woke up a bit later in the morning and let Ashely know that we wouldn’t be coming in. After typing that message, I fell back into my pillows and exhaled deeply. I was exhausted. Not physically so much as emotionally. I spent the rest of the day in bed, trying to fight against the demon of apathy but losing at every turn.
I kept the curtains closed over and locked the door so as not to be disturbed. I wanted to be alone and yet I longed to escape the silence. The minutes ticked by and turned into hours. I couldn’t bring myself to get out of bed, though I railed against the deafening silence. I felt like there should be some conversation, some…I don’t know, something. It was so quiet. I yearned to hear another’s voice. To talk to me. About ordinary things, about extraordinary things. Anything to distract me from this dark quiet for a while. The silence was deafening. And yet I couldn’t break away from it.
A sad, slow wash came over me as I thought about Tara and how little I knew about her. Those thoughts led me right down the path of wondering what people would know about me when I die. I tried to put the brakes on those thoughts, but come flooding in they did.
I’m a terrible cook. Really embarrassingly awful.
I’m pretty terrified of flying, though Xanax has made it possible.
I suck at algebra.
I’m a black belt in karate and a baseline piano player.
I’m a bibliophile, and I’d be hard-pressed to name my favorite author.
I love the Red Sox and the Patriots. I’ve never been to a Celtics game or a Bruins game, but I feel like that’s something I should do.
The first concert I ever attended was Frank Sinatra. I took my grandparents. It was one of the best nights of my life. I’ve seen Baryshnikov dance and Jerry Lewis act on stage.
I love Star Wars and Star Trek equally, and that makes me a freak even in the geek world.
I once lived in the same small town in Connecticut as Stephen King (though not at the same time he was living there), and that knowledge for some reason made me really happy.
Getting lost in the pages of a good book has saved my life on more than one occasion.
I have the ashes of my best friend, Paul, sitting in my office because I haven’t been able to bring myself to scatter them all yet. I did scatter some in the Pacific Ocean when I was out in LA back in 2016, and if I have the strength physically and emotionally, I’d like at some point to scatter the rest at Yankee Stadium, because he was as big a Yankees fan as I am a Red Sox fan. Despite that, we loved each other. I also have the ashes of Billy Parker, my parents’ best friend and a man who was like a second father to me. And, of course, I have some of my Dad’s ashes. My office has become something of a crypt. That’s not creepy at all.
There’s a more exhaustive list, I’m sure, but there are some things that you now know about me that you may not have known before. Take from that what you will.
Rise Against ALS! 