What the Fuck is ALS?

Posted: August 20, 2014 in Uncategorized

I’ve seen a lot of people put that on social media lately.  I ask the same question a lot.

Is it when your son barges in your door smiling ear to ear ready to show you the video from your daughter’s wedding that you were too frail to attend the day before and finds your rotting corpse frozen in a deathly scream; eyes agape, clutching your oxygen mask in one hand while the soundtrack of his plunge into adulthood is a shitty mix of breathing machines, air conditioners and tour de france reruns? He talks to your body for a minute, ignoring the smell of death and believing that if he keeps talking you will wake up. Wake up dad. I brought the tape. Dad…

It probably goes back beyond that moment. That’s probably actually the friendliest part of the disease. The release. Your kid thinks that your rotting corpse smells terrible, but he more fondly remembers lying on the floor in your apartment watching Mel Brooks movies and eating sesame chicken. He remembers the only time you ever yelled at him, because he was bouncing on your water bed and fell off onto a dresser and that you used to tiptoe over him every morning as he pretended to sleep, all the while wondering what would compel someone to go run without being chased by the police. He’d start running years later, because there was no ice bucket challenge. There was just this disease that nobody knew about until it killed a loved one. A disease and a fundraising 5k race. On Father’s Day. Before all that though…

Is ALS when you look at your son and hang your head, embarrassed to ask him to leave for 4 hours so you can take a shit in the little plastic bowl in the middle of the living room? Is it sitting on this little fucking toilet, alone, staring at the wall, thinking hard enough to use what little muscle you have left to try utilizing the single most basic human function? ALS, then, perhaps could be described as having to use Professor X level brain power to squeeze a turd out. It doesn’t get much better when he comes back and finds you collapsed on the floor with your underwear around your ankles because you couldn’t make it six feet back to your bed? Then you have to shake your head in shame while nodding yes after he asks if you need him to clean up after you and looks in the bowl to see that in four hours all you could squeeze out was a bloody marble and a couple drops of piss that looked like mulled cider.

It goes back further than that actually. Dad died nine years ago today and I’m just now wrapping my head around it all.

ALS started by robbing him of the ability to do the one thing that he loved.

Fitting, to be on a run, training for a race, and do a face plant because your leg gives out. More fitting to be told for six months that you have a pinched nerve in your leg. Then you look down at your leg one day and it looks smaller. Feels tingly. Numb. Then you blink and your leg is gone. So the neurologist shows up and tells you that you are dying. The disease might be first described by driving for three hours planning what to say to the sons that grew up knowing you were invincible. They’re 23 now and you’re about to teach them their first lesson in parental death. You show up and the words aren’t what they were in the truck because the muscles in your throat have begun to atrophy, so on top of struggling to move your vocal cords, you can’t swallow either, which sucks a ton of ass because the tears that you’ve been desperately holding back so the kids don’t see how fucking scared you are, just pooled in your throat and you can’t even get the words out if you DO remember what they were. So you mutter, “It’s a disease. Lou Gehrig’s.” And then you respond that ultimately you’ll be paralyzed, but you fail to admit that you are going to suffer a torturous death over the next year or so. And then you say you love them, hug them, tell them not to worry, and you leave. They know you won’t die because they still think you’re Superman. Superman doesn’t die. He puts his underwear on the outside of his tights and fucks shit up all day before going home and bedding Lois Lane while thinking up articles for the local paper that are just satisfactory enough to be human.

You spend the next several months on the phone with them. They hear your voice failing and the coughing fits turn into death matches with mucous because your throat is even worse now. Forming words requires the same amount of focus as brain surgery and clearing your throat is like climbing mount doom on bath salts. You are dying at light speed and you’re trying to fake survival. The kids are noticeably scared and hiding their sadness. Then the kids are coming to save you. After hours and hours on webmd doing what scared kids do when a loved one is dying; developing ground breaking cures for horrible illnesses, they have thrown their hands in the air and refuse to let you hide your decay any longer.

Your youngest son has a hard time with it. He starts visiting every chance he gets. He sits and writes things to you rather than talking so that you don’t have to deal with the frustration of spending fifteen minutes to spit out a three word sentence while having a million things you wish you could say racing through your head. You want to explain life to him, and death. But all you can do is stare through your sagging eyes and be proud of the floundering imbecile that he has become. He lets tears escape sometimes when you choke for long periods of time and he knows that you only sleep for about 15 minutes a night because he curls up awake on the floor next to the bed and prays to a god that he doesn’t believe in to make this go away. He wants to wake up now. He wants his dad back so that he can fix all the shitty things he did as a son. He wants his dad back so you can fix all the shitty things you did as a dad. ALS is staring. Its helplessly watching your body disintegrate and hoping that people don’t feel bad for you while trying desperately not to feel sorry for yourself. You crack a joke one day to show him that you’re not scared. “I finally lost all that weight and didn’t even have to run,” you say, smiling through skeleton lips over the course of five minutes, stopping to think carefully and talk your vocal cords into the complex muscular action required to make sound… and hoping that it was funny enough for him. Joking about your own death is funny, right?

ALS might even be summed up by describing the pure hatred you feel just before your death, lying imprisoned in your bed and watching the people paid to care for you rob you blind. They take everything that you had just the other day written to your youngest son to take after your death. The things that meant most to you. You can’t open your mouth and say, “please don’t do that. Mike wants that. He likes stuff like that and once he was a little kid that I held in my arms and promised the world to. I failed then and I kind of wanted to at least give him these things.” You can’t beg them to not abuse you, because you can no longer use your arm to pull your body up the way that you had for the last couple weeks of life, let alone defend yourself against multiple people that are so jaded by their line of work that they’ve lost all compassion.

ALS is going from 220 lbs to 90 lbs over the course of a few months and knowing that not even your own kids can recognize you anymore. You smell like shit because you are too frail to shower but you’re so damn awake that you don’t want anyone dragging your naked ass into the tub and scrubbing you down so you crawl there and try to do it yourself every day but suck at it because you’re too weak to squeeze the damn soap out of the bottle. You can’t eat because you can’t swallow and every bite feels like a suicide attempt. You can’t sleep because you can’t breathe or stop thinking about death and wishing that it would come sooner than later because things are getting a bit lonely, grim, cold, boring, sad, lonely, lonely, lonely. But you don’t want to die because that fucking kid keeps looking at you and pretending to be a man while shitting his fucking pants because he doesn’t know how to give up on saving you. He watches you suffer and tries desperately to cope with the reality that death is the only comfort you might find right now.

ALS is the son becoming the father while the father becomes the son. He asks you if there is anything that you might want before you die and you point to the truck in the driveway and gesture a steering wheel motion. He carries you out to the car and smashes your fucking head on the door while trying to get you into the seat. You remember doing the same thing to him when he was younger. You point the turns out and in the corner of your eye you see him watching you carefully as your tears dry on your sunken cheeks every time you pass a farm and remember 50 years ago when you were young and had the whole world at your feet. You get back home and he puts you back in your bed and says he loves you for what is going to end up being the last time. You know it. He probably knows it but refuses to admit it. He tells you that he’ll be over after the wedding so that he can show you the tape of your daughter as a beautiful bride, the way that you probably always pictured her growing up. You take the last of your energy and you type into the little talking box thing that you previously used only to write short swear words and try making the kid laugh that, “I do not fear the end. Is near.” He hugs you and kisses you on the forehead and turns the TV down a little bit. The Godfather is on and the kid just left after an awkward part about being a father to your son. You wonder what everything means and you accept that you will never see him again.

The next five days are spent doing these exact things. Nothing more. Nothing less. Choke, Stare at the ceiling, choke, oxygen mask, ceiling, swallow, choke, ceiling, tour de france, choke, ceiling, drink Boost, think of Mary, think of Mary, don’t fuck up the wedding by dying. Think of Mike and Mark and wish them the best. Die knowing regretfully that your kid is the next person coming into the house.

That’s ALS. And for that reason, I am grateful for all of this ice bucket challenge stuff. The recognition of the illness has been profoundly heartwarming and the money truly gives me hope that someday someone will get diagnosed with this thing and their story won’t have to unfold this way for anyone else. There are a lot of fucked up diseases in the world. A lot of them torment and kill their sufferers. We all find our various fears and sensitivities based on the things that we witness happening to our loved ones or ourselves. It’s all shitty and people’s willingness to acknowledge a terminal illness is perhaps a bright spot in what is otherwise a pretty harsh existence.

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