Ask Polly: My Boyfriend Has ALS, and My Friends Are Making Things Worse

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Dear Polly,

Eight months ago my boyfriend/favorite human in the world was diagnosed with ALS (also known as Lou Gehrig’s disease) at the age of 32. ALS affects all the voluntary muscles in the body — he will eventually lose the ability to use his hands and arms, the ability to walk, talk, swallow, and breathe. The disease manifests differently in everyone, so we don’t entirely know when or how things will progress. His eyes will still work, as will his big brain and ginormous heart, the best parts.

The shock has worn off, and I’m starting to rebuild my dreams amongst the ruins that was the life I’d planned. My life with J will be a life I never imagined, but it will be filled with love and joy and appreciation for the smallest things. In the time since his diagnosis, we’ve started making huge life decisions: commitment ceremony (turns out in America you really shouldn’t get married when you’re facing chronic/terminal illness), starting a family, and moving across the country to be closer to family. And I’ve started to share those decisions beyond our inner circle.

Here’s the rub — I’ve found myself, on multiple occasions, sitting through the most ridiculous, ignorant, judgmental conversations of people telling me what I should do with my life, weighing in, unsolicited, on our decision to stay together and commit to our relationship, our decision to have a child (that’s still a secret, but oh buddy do I anticipate judgment), and my decision to possibly leave my job and move across the country. I think about every aspect of these decisions every day. None of this is lost on me, I have thought about every possible outcome and judgment, but I landed on these decisions because it is the best and right thing for me to do at this moment.

I have sat in a closed room with someone and smiled and nodded when they told me to leave my favorite human being. I was kind and polite and respectful. They know so little of my life and relationship, and yet I sat there valuing their feelings over mine. I listened patiently when a friend delivered a 20-minute lecture about waiting a year to have a child and suggested that we had to “plan” for this and that she wouldn’t feel sorry for us if we were destitute because we didn’t plan right. HA-HA-HA, how do you plan for a disease that may cost us $300,000+ a year? HOW? That baby isn’t the problem — the problem is the U.S. health-care system and that lack of research, funding, and support for orphan diseases. But during that conversation I was so small and quiet and scared.

How do I start to set better boundaries with friends, family, co-workers, and acquaintances? How do I stop soliciting other people’s opinions? How do I shut people down when they comment on life decisions that are not open for discussion?

My old self (pre-diagnosis) craved approval from other people, as if I could crowdsource life decisions and have guaranteed safety. Today, I know there is no safe passage and that this was the pile of flaming hot shit we were given (and that while we face unique challenges, everyone gets their own pile of shit to deal with). We will tend that shit and plant a garden and have a party on it and invite our closest humans to dance amongst the shit with us.

Sincerely,

ALS I Need Is Support, Not Judgment

Dear ALSINISNJ,

Well, here I am, crying over your perfect shit garden party. I’m so sorry for everything you’re facing, but I’m also so absolutely crushed and flattened and disintegrated and then maybe even reconstituted by how much clarity you have about what should come next. So even though the path you’re on seems absolutely harrowing, I’m having trouble worrying about how you two and your future babies will fare. I feel sure that you will have a thrilling, difficult, rich, joyful life and anyone who’s permitted to witness you navigating these next years will feel grateful for the privilege of seeing your particular variety of grace in motion.

I have to tell you, though, that when I tried to copy and paste your letter into a Word document so I could start to write a reply, this is what appeared when I hit “paste”:

Death is always on the way.

That’s a line from The Sheltering Sky that I had recently copied and pasted into Twitter, because I was in a weird summery mood that featured thoughts like “Creative fulfillment is for suckers.” And “I should be sipping cocktails in some wildly attractive outdoor setting.” So instead of writing my column, I tweeted about how there should be a foodie/mixologist version of Club Med with a jaded expat flavor to it:

“‘Death is always on the way,’ she murmured as she took a deep pull from her edible-flower-festooned cocktail and savored the last of the jamón ibérico.”

I thought this was so clever. Forgive me! The point is, I’m having one of those days where I question the value of everything around me. It’s not about malaise, though. It’s more of a panicked life-auditing session incited by the visceral knowledge that death is always on the way. (Please cue Mozart’s Symphony No. 40 in G Minor, IV: Allegro assai for the mood here. Yes, truly a bourgeois flavor of panic!)

So just for example: I live in these glorious mountains just north of L.A. (not Hollywood; I’m in the scrappy downmarket mountains!), and there is nowhere to sit outside and drink delightful booze concoctions and stare at the mountains. What in the fuck? I’m telling you, if you brought someone who lives in NYC out here and they looked at the view and took in the year-round 75-degree sunshine and then you told them that none of these sorry suburban rubes has constructed an outdoor space from which you can gaze at the majesty of these glorious hills while also pouring pretentious artisanal liquors into your face, that New Yorker would gasp and spit on the ground and catch the next plane back to the big city.

All I can figure is that the suburbs are so regular-life-focused and so safety-focused and so bathed in a kind of corn-syrupy Family Pak mundane blah “Don’t forget the toilet paper” nothingness that no one even realizes that death is always on the way. So much so that when I take my kid to soccer practice up at the amazing hilltop vista location that her coach so wisely chose (bless him!) and when her coach asks for volunteers to fill the position of team coordinator, I am tempted to slip outside the boundaries of the acceptable corn-syrupy Family Pak mundane blah language that everyone speaks up here and just shout “I have no time for that! DEATH IS ALWAYS ON THE WAY, DON’T YOU GET IT?!!”

That’s just how it gets when you wake up one day and realize that you’re surrounded by people who don’t seem to recognize that we are all rapidly dying and therefore should be seated outdoors with a plate of cured meats at our fingertips. Likewise with these absolute cretins who find out your true love has ALS and then proceed to lecture you on leaving him immediately. They are cut from the same gutless, tasteless, fearful, mundane, zero-sum-game cloth as those who stubbornly refuse to build outdoor spaces for lazy drunks like myself. Except they’re way worse. It’s like the fucking house is burning down and they want to force-feed you a multivitamin. They cannot lift their sad robot faces away from their retirement-savings spreadsheets long enough to grasp how it feels to know that darkness is speeding toward us and we will not be able to stop it. They just cannot believe that this story that you are telling them is real. And if they get even the smallest hint of its realness, their only (panicked, anxious, confused) impulse is to say, “Run away, be safe like me!”

Sometimes it helps to think of Frida Kahlo. I won’t dive into a broad-strokes feminist Cliffs Notes on the woman, but Frida went through some stuff: She contracted polio at age 6, she was in a bus accident that destroyed her pelvis and left her in constant pain at age 18, obliterating her hopes of becoming a doctor. So she became an artist instead, and she made a kind of religion out of suffering. Her self-portraits show us a body dissected or scattered or sewn together: a broken spine, a wounded deer, an exposed heart. She planted the most glorious flowers in her shit heap, in other words.

You probably already know something about Frida, or maybe you’ve merely seen her staring at you from beneath her unibrow with something that at first looks like disdain. But then the longer you look at her, the clearer it gets that this is not contempt you’re seeing but peace. She has dignity, and she is at peace with herself. She’s at peace because she has private strength and an understanding of her own beliefs that doesn’t include pleasing the barely conscious, flat-footed mouth-breathers around her, who not only don’t understand the concept of owning your own experiences without bending them into a pleasing shape for others, but who also don’t know about being cut open like a fucking fish to be saved from certain death, and who also don’t look up at the majestic hills all around them and breathe in the warm summer air and sigh and smile and think DEATH IS ALWAYS ON THE WAY. Mmmmmm, that salty sweet umami of death death death, always approaching, never not approaching: Yum.

“Imagine not knowing what real love feels like,” Frida’s eyes say to you.
“Imagine not knowing how incredible and mind-bending and perfect it is to grow a garden on a stinking heap of shit.” Frida asks that you pity these laminated half-wits with their sad sacks of frozen-fish-stick wisdom about waiting 12 months or 18 months or three years to have a baby or stabbing your one favorite person in the face so you can avoid seeing him lose … anything. Forgive these fallen ice-cream cones, melting on the pavement just because someone forced them to picture slowly but surely running out of dollar bills. Pity them as they tell you that not only don’t they approve of your choice to stay with a dying man but they won’t feel sorry for you if you are destitute because you didn’t plan right. Oh my God, but don’t forget to laugh at them! Because they are sad melted-ice-cream-on-the-hot-cement punch lines in human form! “I want to warn you that I will not feel feelings about anything that happens to you from this point forward because you are already making bad choices!” screeched the lukewarm chocolate puddle.

Just witnessing something that pathetic is a celebration of light and sound unto itself. Be grateful you know anyone that sick! What a comedy gift! Oh, the hilarity of people who don’t know how to feel anything but who always know how every single thing should be done. People who will never listen first, especially when the stakes are hopelessly high, but who just start talking to anyone and everyone about what should happen next, like a dog chained to his own dog house, safe, safe, safe and miserable and barking his sad face off around the clock.

Yes, more metaphors! Why not? More, more, and even more! WAITER, BRING ANOTHER ROUND, GODDAMNIT, THE SUN IS SETTING ALREADY!

Ah, but I know it’s easy to hate them. You only hate them because you don’t know yet how to dish up the eyes that live under that unibrow. But let me tell you what, it usually takes many, many years to get those eyes! I’ve been practicing them myself, ever since I noticed that my friend who almost died of cancer years ago has them. She asks for exactly what she wants, everywhere she goes. She loves being challenged, but if someone says something that sounds faintly like the bark of a chained-up dog, she interjects. She doesn’t mind making someone slightly uncomfortable, because she recognizes that death is always on the way.

She also explores a lot and finds new places that serve delicious food. She is a little less than flush, so she saves a lot of coupons and finds deals and says things like, “Oh, this is happy hour, we should’ve gone to a happy-hour place.” And when our amazing drinks arrive, she tells me about The Death Chemo, which is the chemo you get before a stem-cell transplant that makes your teeth turn gray and your hands bleed and your organs start to fail. “That can’t feel good!” I yelp, sipping something called velvet falernum like just the sort of ignorant slob who’s never almost died I am! “No, it does not feel good, because you are literally dying,” she replies with that Frida look on her face, the face of someone who wants all of the booze and the salty things and the views and the hot men and the delirious scary perfection of living to be distilled into a liquor and then poured down her throat. (Though she never drinks to excess, to be clear! I don’t know why, I’m not Frida yet, don’t look at me!)

So. Listen. You are going to have a baby whenever the fuck you like. You are going to move wherever you like, too. You are going to stick with your guy, and watch him suffer sometimes, and you will suffer, too, and it’s going to be fascinating and terrible and maybe, yes, your last dollar will fly straight out of your hands. (Set up a damn Go Fund Me already and I’ll give you a few of my dollars right now! Yes, the fact that medical care requires a Go Fund Me is horrifying and depressing, but here we are, on the shit heap, doing the best we can.)

Even though you’re on the shit heap, you’re in the exact right place. You are acknowledging the shit and yet you’re still planting flowers. THAT IS HARD. How did you get here?!! Because you are touching the divine. Celebrate this glorious, delicious, terrible moment! (This is the part where Mozart’s violins rush up and down and all over the place like they’re joyful and frightened at the same time!) By not being afraid (or not afraid enough to run away), by drawing a big scary card out of the deck and then outlining your future calmly and carefully instead of evaporating on the spot, you grew an instant Frida Kahlo inside of your body. Frida is in there! So now, when these disposable plastic ding-dongs want to make dumb noises about becoming destitute, you are still making your old placating sounds and maybe forcibly squishing your face into a polite shape. But inside of you, Frida is setting shit on fire. She is angrier than usual because she wants so badly to come out and give them the eyes. The eyes that say “No, dummy. Just no. You are very sad and just looking at you makes me sad. Now leave me in peace.”

Maybe you’ll lose these friends, and maybe you won’t. I don’t care so much. Just as death is always on the way, there will always be idiots on the way to slow us down with their sad bleating. Sometimes it feels like we spend our whole lives just stepping around their sticky chocolate puddles on the sidewalk. They always know the one correct path forward, and they will tell us all about it until the stars fall from the sky.

But Frida says let it go. You have a shit garden to grow, and a shit garden party to throw, and you are going to be surrounded mostly by people who understand and celebrate what you’re choosing. They don’t just love it, they want a piece of it, because they know that you — who have this precious access to real knowledge of lasting suffering and insurmountable obstacles and raw fear that curdles your guts and self-doubt mixed with faith (“Am I strong enough for this? I will be strong enough. And maybe sometimes I won’t be, and that’s okay, too) — you have something precious in your hands.

That doesn’t mean you won’t have dark times or moments of doubt. Things will feel scary and out of control. Throw a baby into any picture and that’s just what happens, and your picture will feel like sheer madness, again and again. But you already know that, and I can tell that you’ll keep anticipating all of the shit and the flowers and welcoming both as bravely as you can.

In 1939, Frida Kahlo was supposed to have a gallery exhibit in Paris, thanks to the fact that André Breton had declared her a surrealist. But when Frida came to Paris she developed a terrible infection and Breton apparently mismanaged the whole show and Marcel Duchamp had to save the day by finding a gallery. (Frida writes that Duchamp “is the only one who has his feet on the earth, among all this bunch of coocoo lunatic son of bitches of the surrealists.” Read the whole letter! Frida really knew how to call out the melted chocolate puddles of the world.) On top of this, Frida was so sick she had to be brought in on a bed. But do you think she said things like “Oh, hey, sorry about the bed, guys.” No. She took in the tedious “artistic bitches of Paris” with her steely gaze like a queen, and her cot became a throne.

That’s how you’re going to do it. You’re already there, in fact, you just have to dare to let it show. But if you’re still not sure what to say when these false, unreal, rotten bitches (as Frida would put it) ask you what you’ll do next? Conjure a unibrow and say to them, with no smile at all, with not even the faintest trace of an apologetic wince: “Death is always on the way, and it’s coming for all of us, but you don’t have to be so scared. It’s not nearly as bad as you think.”

Polly

Order the new Ask Polly book, How to Be a Person in the World, here. Got a question for Polly? Email askpolly@nymag.com. Her advice column will appear here every Wednesday.

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Ask Polly: My Boyfriend Was Diagnosed With ALS