Getting through the first seventeen hoursafter learning you might have ALS:a how-to guide

1. Take a notebook and pen—one that works—to the doctor’s appointment. When the doctor looks down and sighs as if she’s trying to shed the heaviness you both feel, be sure to have both pen and paper ready. Listen carefully as she says, “I suspect you have ALS.” In that moment your brain might not be working right. That is okay. Try to focus on her words and make the symbols for ALS as many times as needed. She will nod in agreement when her sounds and your scribbles align.

2. Walk out of the appointment and search for your phone. Text the friends who marked their calendars with “After doctor support.” Tell them to meet you at the bar.

3. Arrive. It’s okay to feel out of sync with all the people giggling around you. Let your friend choose a table. Excuse yourself and visit the restroom. Be mindful, if the bathrooms are gendered, to choose the one that matches yours. Sit down on the toilet seat and cry. If there is no one else or if you feel okay with someone hearing, cry loudly. Then pee. Wash your hands, wipe your face. Wink at yourself. Apply lipstick if that’ll make you feel stronger. Take a tissue to the table.

4. Join your friends at the table. Be sure to sit where you feel most held. A corner seat is good for that. Allow your friends to order you a drink and choose the appetizers. It’s okay if you forget to consider the happy hour menu.

5. Ask the questions. This is a good place to ask things. You are not alone now and your friend who holds the world of Google can be trusted to translate. Ask anything. “How long is the average time to live?” “Will I die of suffocation?”

6. Cry. It’s likely that you don’t often cry in public, but this is the time to break that taboo. Lower your face into the brown paper napkin. Let sorrow rise from inside you. Let it shake your shoulders and escape the narrow passage of your throat.

7. Ask for jokes. When you start to feel like you are sinking below the surface, ask your friends to tell you jokes. Laugh at all of them, even the dick joke. Search for a joke inside your own mind. It must be there. Allow your laughter to swing into crying and then back into laughter again. If you have never faced death like today, your emotions need a lot of space to roam.

8. Eat at least ten bites. Your belly will constrict with fear. But all these weeks of tests and waiting have already worn you thin. You need sustenance. Take two french fries between your fingers and dip one in the mayo, one in the ketchup as if they are legs with different colored socks. Chew. Taste the tang. If necessary, use water to help you swallow.

9. Hug your friends goodbye. Notice their bodies close to yours. Let your nose rest on her buzz cut and breathe in that comforting scent. Feel how thin he feels after his open-heart surgery. Cusp your hand over his soft, warm cheek. Don’t let go of his hand until you split off into your own apartment.

10. Sit down. It’s okay if you forget to take off your coat and hat, but do remove your gloves. While I want to advise you not to google ALS in this moment, it might be very difficult to refrain from doing so. Set your timer for fifteen minutes.

11. Answer the phone. When your partner calls, answer. Be honest when he asks you how you are. This is not the time to “be strong.” Allow him to come over, you may really need the company. And he might too.

12. Bathe. Do the thing that will bring you most comfort. If you’re able, I suggest taking a fragrant bath in candlelight. Lift his shirt from his body with your able hands. Untie his belt. Stay close to him as you both step into the water together and lower your bodies down. Roll the soap between your hands and watch it froth. Transfer the soapy foam onto a washrag and place it in the nape of his neck. Draw it down as you trace the shape and strength of body under your hands. Wash his whole body with this careful attention and let him reciprocate. Let him wash down the tears brought on by the thought of no longer being here to hold or be held by him.

13a. Try to sleep. Take some of the sleeping drops your friend who is going through chemo gave you. Lie awake. Reach for and turn to each other. Make love. Watch as your mind leaves this moment and goes to your death. The dying moments where you lie, alone and plumbed through with pipes on creaky white sheets, holding onto this moment. Don’t stay there. Turn around and swim through the viscous night. Swim right back into this moment, this moment where your lips are still working, where you can kiss him still.

13b Try to sleep. When you can’t, sit up and look at the cascading handrail of the city steps and the long power lines glistening in the tungsten street light. So thin, like spider webs.

13c. Try to sleep. Walk down to the kitchen and ask the stove to tell you the time. When you learn it’s 2 am, hunch down and look at the dying embers in the fireplace.

13d. Try to go to sleep again. This time visit the bathroom. Don’t be surprised if your period has started weeks too early. Bodies do this when they feel panicked.

13e. Try to sleep. And when you can’t, get up and make yourself a cup of hot water. If your belly aches, eat half a banana while you watch the cat curled up, now a contoured button on the corner of the rug.

13f. Try to sleep again. Feel the relief wash over you when the sky begins to shed its darkness, when you can tell you made it to the morning.

14. Turn to each other. Hold each other tightly as both of your bodies shake in sadness, as you wake into the day neither of you ever wanted.

15. Then roll out of that warmth towards the edge of the bed. Lift the covers. As you come to a seated position, swing your legs out of the bed. Feel your feet on the wooden floor. Lift your weight up onto your feet.

Congratulations. Not only have you survived these hours, you are also practicing the thing that will keep you going in the coming passage: standing up, physically or not, and beginning again.