I like leaving for a trip, but this time I like it even more because I am leaving behind the many reminders of my illness and of a future I still grapple to embrace—the five boxes of medication I start when I return from my trip. The outside walker. The slanted stacks of papers from the medical maze. The unopened and unassembled shower chair for when standing showers becomes too difficult. The plastic arm to help the ventilator pipe fit onto a wheelchair.

But I’ve never before attempted international travel while terminally ill. After check-in and a last long lean into my mother’s arms, my body buckles into a wheelchair. Surely this is not my first time being wheeled around. I’ve been in strollers, on bike handlebars, in wheelbarrows. But today it is my adult independent self that is asked to sit and be moved by someone else. For a moment I want to brace—fasten a seatbelt or hold the handlebars. But Kim, the person at my back, pushes just slowly enough for me to trust the ride.

My beautiful body reads the different floor textures like braille. The coaster-sized porcelain tiles with their wide lines of grout reverberate like cobblestones. The expansion joints in the terrazzo floor are so delicate, I need to listen with my entirety to feel them. The aluminum plates that hide underfloor cables make for hiccups in the ride. And the rug feels soft, almost like sand slowing us down.

At the gate they need me to check my carry-on, but my ventilator is in it. “Take the ventilator out,” they say, “and then check the bag.”

“No,” I say, “the ventilator pipes are too fragile and will get damaged in my soft-shell bag.”

“Okay, okay. You can have it on the plane.”

Thank goodness I can still speak.

I didn’t book my tickets for this trip, the school booked them for me. They put me on the same flight as Donna, another Carlow student. We have a six-hour layover, and Donna had booked a lounge suite where we could pass the time. After we disembark in Philly, I see Donna only briefly. The airline had checked her bag through from Pittsburgh to Dublin. But they told me that they couldn’t book mine through in the same way. I would need to pick it up in Philly baggage claim during the layover, then recheck it to Dublin. With a wheelchair.

I tell Donna that I must get my bag before meeting her at the lounge. Then Breeze the airline assistant wheels me away.

We get my bag at the luggage claim and take it to the airline that brought me to Philly. “Oh no, sorry,” they say. “This ticket is two separate bookings. We can’t check your bag, you must go to Terminal A.”

Breeze whisks me away and suddenly we are at security. “Shouldn’t we go to Terminal A first?” I ask.

“We’re going there,” she replies. I’m confused. In my mind you check your bag before you go through security.

TSA screens my large bag, the one I’m planning to check. A blonde guy with blue gloves works his way through my belongings, and I feel angry as he unwraps my stuff, opens my candle and smells it. He takes out the protein powders to screen them. Sets aside my protein shakes and takes apart my blender.

“But I want to check the bag, not take it on the plane,” I say, confused.

“But you can’t take these through this security point.”

But I don’t want to go through security. I just want to check my darn bag and then go through security without it. Another lady jumps into our confusion and amplifies it with unsolicited advice. My eyes burn with frustration and simultaneously I feel ashamed that something so small can make this white lady cry.

“Are you okay?” asks Breeze.

“Yes, yes,” I say.

TSA man restates the facts. “Either you leave the shakes and blender here, or go back and check your bag.”

We turn around to go to Terminal A without going through security. “How do we get there?” I ask.

“We walk,” Breeze replies. Walking turns out to be a rotten task with me, two bags on my lap and Breeze—weighing no more than a suitcase herself—tries to push me in an old wheelchair while also dragging my 46-pound bag behind her.

“Wait Breeze,” I say. “I can walk. Let’s work this out.” I get up and push my carry-on bags perched on the wheelchair. Breeze brings the large bag. If I had studied Philly’s airport, I would have known that Terminal A is quite far from Terminal F and that a shuttle would have been a smarter plan. Maybe not for a fit self, but definitely for this self! I stop a couple of times to catch my breath.

When we arrive at Terminal A, hot and sweaty, I am well positioned for a temper tantrum. It’s nap time, I’ve not had lunch, I am thirsty and tired. If you have ALS, it is important that you rest, hydrate and eat regularly. I can’t wait to check this bag, slip through security to food, naps and water.

But bad news awaits. The airline that must check my bag to Dublin won’t open for two-and-a-half hours. The terminal is a single room, with no bathroom and nowhere to buy food. Since Breeze and I can think of no other practical option, she leaves the wheelchair with me and goes on with her day.

The first airline’s job to hand me over to the next airline is done. I take my place on the fake leather seat and watch my mind throw a temper tantrum.

If I was able-bodied I would have found a way out of there to food and water, at least. But I am not. Our world is not set up to take genuine care. The first airline, knowing of my condition, hearing my request to book my bag through to Dublin and my need for a wheelchair, did not think in terms of care. Even though checking a bag all the way through was possible—my travel companion with the exact same travel plan had done just that—Breeze (an employee of that airline) was not empowered to think strategically with me.

And so I landed in the seam, in the crack between two airlines who had done their duty, and who had no further responsibility toward me.

What is the impact of landing in this unsupported and unseen no-mans-land? The lack of water makes my mucus thick so I can gag on it. It worsens the fasciculations in my body, making it harder to sleep. And contributes to constipation and ass-figs (also known as hemorrhoids). My body hopefully meets its need for protein and calories by taking from my belly fat rather than muscles or organs. My tiredness will be passed onto my future self. (And it was. I was so exhausted upon arrival that I could hardly muster the energy to chew my sandwich.)

All of this is manageable. At least this time and for this person. But what about all the others who have slipped through the cracks?

Once I stood in front of a glass case in the national history museum of Mexico, looking at a figure carved out of rock. The description said that once very, very, very long ago, people who were born with Down’s Syndrome were considered gods. Imagine that! Imagine if tomorrow everyone on the margins woke with garland of flowers and prayers and incense around them. Imagine their joy as they stepped or rolled or stumbled into a world so tightly woven together in reverence for life that they never feared slipping through the cracks ever again?

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.

I. Eat or be eaten

I first saw it on the after-visit summary from my January appointment with the neurologist. Weight: 117 pounds. This is the least I have weighed as an adult. In another context being underweight would be just fine with me. I grew up in a fat-phobic culture. I grew up believing I should look like Kate Moss. I wasted way too much life believing the lie that “to be thin is to be beautiful and to be beautiful means you belong.” But now, now my context is changing.

Weight loss is a sign of ALS. This can be because chewing and swallowing is difficult, and because as some muscles atrophy the rest of them need to work harder, so you burn more calories. If there are no extra calories to burn, your body will break down muscles and organs to keep going. People with a larger body mass live longer than skinny sticks like me. In mid-February I met with an ALS dietician who suggested I eat at least five high-calorie high-protein meals a day. The underlying message I walk away with is, “eat or you will be eaten by this disease.”

That threat is not unfamiliar to me. “Eat or be eaten” has the same timbre as “stay thin or risk rejection.” I know what to do next. First disconnect from what you need, want or feel, and secondly follow this new diet toward safety without question.

Now if you know me you know that I eat like a bird—nuts, seeds, sprouts and salads. I don’t do well on loads of fat and dairy, protein, and carbs. But in this moment of my life I am in a state of self-forgetfulness. I am disembodied. I am afraid to die and so I treat my body like a machine that must eat, must eat, must eat. In addition to this mandate, I started taking ALS meds that help protect my neurons from dying. The meds need to be taken exactly twelve hours apart on an empty stomach—two hours after your last meal, one hour before the next. This means that not only does my diet change, my timing changes too: 8:30am breakfast, 10:30 meds, 12:00pm lunch, 3pm snack, six o’clock dinner, 7:30 snack, 10:30 meds.

Slowly my appetite started to dwindle. Then I got COVID and my appetite disappeared. And then I got seriously ill from what seemed to be a stomach bug. My weight dipped down to 112 pounds. I have never felt so ill in my life. For a week I didn’t leave my house. I spent the whole week lying down. I was a piece of cardboard at the bottom of a lake, saturated and slowly disintegrating. I was a blanket of bones that assembled to attend virtual appointments and then collapsed into naps. I was soup that rose and fell on tides of nausea. I was a dysregulated body with an appetite that disappeared, then suddenly flared up into sharp hunger and a simultaneous urge to defecate.

Have you ever held a raw egg in your hands and felt that even if you clamp your hand tightly, some thin part of the white runs through your fingers? It felt like a thin part of me was seeping out.

This appetiteless nausea combined with regimented meals continued for five weeks. I thought, ”I cannot live like this.” On the fifth Monday of breathing these gray waters I stood hunched over my kitchen sink. I’d felt a disorienting nausea all afternoon. I was able to keep a mango and protein powder smoothie down, but I knew I’d not eaten enough. Before bed I opened a vanilla Ensure shake with trembling hands. “If I can hold this down,” I thought, “it’s at least another 350 calories.” But as soon as I put the cap back on the empty bottle, my own cap came off. I reached the sink just in time to watch the smoothie and the shake stutter out of my body.

“This,” I swore to myself as I gagged on the last bits of sticky mucus and vanilla-flavored vomit, “This is the last time that I will force my body to do what she doesn’t want to do.” Making a promise like that to my body is not new. Maybe eight years ago I wrote a letter to myself: “I raise a white flag. I am tired of being at war against my own appetites, I am tired of withholding sweetness and affection from myself.” As I wiped my hands clean I remembered and restated that promise. “No more war. No more me overpowering you with what I think you are supposed to do or be. I want to listen to you, I want to care so well for you, beautiful one.”

II. Easter

When I woke the next morning, Tuesday, I did two things. First I asked my partner to bring me celery, carrots and lettuce. I made myself a giant salad, which is not something I’d eaten in weeks. Then I contacted my doctor and told him I felt like shit and was too thin. He quickly replied, “Stop the medication. Nausea and loss of appetite is a side effect, and we need you to maintain weight more than anything.”

I stopped taking the meds. This meant I could quit eating on a timed schedule and could feel for when I wanted to eat. I started eating salad and allowed myself to eat fruits and yogurt (with protein powder!) for lunch. I went through jars of pickled beets like groundhogs through a vegetable garden. After two days, Spring returned. On Thursday I felt the seed of my appetite sprouting. On Friday my partner’s daughter Early noticed and said, “I am so glad you are hungry again.” And then she paused and said, “I hope that doesn’t sound mean!” We laughed.

On Easter Sunday I could eat and stayed vertical and engaged in a beautiful community gathering. On Monday I woke up feeling like a tree in bloom. I felt new. I felt resurrected. And I had put on three pounds. During my 11 o’clock care team check-in meeting I said, “I feel good! Since it is Easter Monday in South Africa, I declare today a national holiday in my home. Today I am going to do nothing but give thanks. Today I rest and bask in what is wonderful.”

As Easter Monday came to a close, I felt like a tree with wilted flowers. I felt saddened that my intentions and actions were so divergent. While I wanted a soft day of being replenished by gratitude, silence, and sunshine, I defaulted into a busy tasky day.

When I was so ill I didn’t have the energy to drive myself to do more, or to criticize myself for this or that. I was too tired to witness my mind reciting my to-do list over and over, like a nervous child trying to cope with the unsettling feeling of dying by being paralyzed from the inside out. No, I was a puddle of breathing guts in skin, surviving.

And now that I am being reconstituted, I find that all my old patterns have rejoined me. I tried to do better on Tuesday, but my day was packed with appointments and paperwork. After a weary day I joined craft night on Zoom, intending to draw. But I got stuck in the waiting room. Instead of texting my friend to let me in, I turned to the Internet and email, hoping to find more guidance on how to tell the kids I’m dying. An hour later I quit the Zoom waiting room. I was a moth caught in a web of dread. I called a friend. “Please,” I said, “I don’t feel well. Come get me.” We went for a walk and ended up sitting on his porch sharing a beer in silence. Then I walked to my partner’s house and said, “I can’t sleep alone tonight.”

This is the last chapter of my life. This is when I get to live my very best life. Now is the time to live the most beautiful, meaningful, adventurous, liberated, joyful, daring, honest, magical, creative, connected expression of my life. I get to live now, even as I am dying. I get to live now.

In my resurrection, I don’t ascend. I fall down instead. I pray, “Please, in this final chapter of my life, please lead me. I don’t know how to live well while dying. Please help me face my fears and everything unconscious that drives me away from the gift of this moment. Please help me see the way. Please help me find the support I need. Please help me see clearly what matters most and help me live into that. Thank you. I rest in you. I trust that you won’t let me die without doing, loving, experiencing what I am here to do, love and experience. Thank you for the life I still have. Thank you that you are here with me, always.”

Section I: Multiple choice questionnaire: How cared for do you feel?

Thank you for taking time to fill out this questionnaire. We know that facing something like ALS can feel devastating in many ways. This disease not only necessitates costly medical treatment, it also requires the support of caregivers and equipment.  Your need for support will increase as you slowly lose your vital functions and ability to communicate and move freely. You’ll need help for things you’ve always been able to do on your own: reaching, touching, holding, walking, dancing, speaking, chewing, swallowing and, if you choose to go onto a respirator, breathing.

This questionnaire will help us understand how supported you currently feel. Please choose only one answer per question.

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1. You are at the very beginning of this journey and many people feel shocked that you might have a terminal illness. Friends from all the chapters of your life are reaching out to you. Do you feel:

a) Held by a large network of care, and trust that it will always be there?

b) Afraid that you will disappear from the front page and into the margins of people’s lives, like the war, the melting glaciers, and in some circles, the exploitation of black and brown people—topics worth mentioning over a mimosa, but not worth getting involved in?

c) Afraid that this illness will deplete your core support group and strain relationships, leaving you more vulnerable?

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2. Many of your friends repeat a similar sentiment. There are variations: “It’s so great that so many people support you.” “You are so strong, and I wish you continued strength to navigate all that is coming your way.” Do you wonder if:

a) They need you to be strong enough to handle this, because they either don’t want to or don’t have the capacity to get involved?

b) They need to imagine you are well supported so they feel absolved from showing up?

c) You might really have what you need for this journey?

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3. When you sent your friend a letter telling him that you might have ALS, he didn’t respond. Do you:

a) Believe that you have moved from being an asset to being a liability and accept that you might not hear from him again?

b) Believe that he is processing and might choose to support you still?

c) Refrain from trying to make sense of his silence and trust that there is enough help?

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4. Your friend writes, “May all the healing light be with you. Sending love!” And minutes later a card from family friends arrives saying, “You are in our thoughts and prayers.” Do you believe:

a) They genuinely care and will be there for you when you need them most?

b) They prefer sending ephemerals like light, love, thoughts, and prayers over offering their help?

c) You can’t know for certain?

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5. When you tell a friend about your health struggles, and for the rest of the visit they continue the conversation as if your illness doesn’t exist, do you:

a) Think this might be too much for them to handle and excuse their behavior?

b) Accept that a core part of your experience needs to be rendered invisible in this friendship and question if this is what you need now?

c) Risk telling them how much not being seen in your totality hurts?

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6. If a friend offers you an interest-free loan to cover your sudden medical expenses and loss of income, do you feel:

a) Excited that community care could replace dependance on financial institutions?

b) Genuinely grateful for his generosity and care?

c) Deflated because your ability to earn money is dramatically diminishing?

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7. It has been six weeks since you said you will ask for help, and yet, you haven’t sent out the meal train or spreadsheet asking for help. What holds you back most is:

a) The belief that you are not doing it right–you could be more clear, you could ask less, there might be a better way to ask?

b) The fear that people won’t show up because you are peripheral, and they are too busy. Modern survival depends on individual income and status; your illness is in the way.

c) The fear that inviting more people in might add to feeling out of control and/or be more work than just doing it yourself?

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8. Why are you so afraid of not receiving help when you need it?

a) You can still taste the disappointment when people who were supposed to care for you repeatedly failed to do so. You spent years becoming self-reliant. This illness makes you vulnerable to those same old injuries.

b) All of this feels enormous. Colossal. Out of your control. The cruelest thing ever. You don’t want it to crush you completely, you need the comfort and kindness of others.

c) You know that your brain has a negative bias. Could your fear be wired in survival biology and not rooted in reality?

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9. Your fears of not being cared for in your disability are not unfounded. We live in a world where there is often insufficient support for those in need of care and their caregivers. Which example feels most relevant to your own experience of not being there for others? Was it when:

a) You didn’t sign up for your neighbor’s meal train when she went through chemo?

b) Your felt worn out and then disengaged from your friend experiencing bipolar disorder?

c) You only now notice the lack of disabled folks in your circle of care?

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10. What keeps you from genuinely being there for others? Is it that you:

a) feel compelled to do more and be more so that you (hopefully, one day maybe?) feel like you belong and have enough? Is all this hustle a jealous lover?

b) experience empathic distress—you feel overwhelmed by all the needs you see?

c) don’t trust that healthy dependency exists? You have curated a manageable existence, defending against the mess of genuine human relationship.

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11. When you confess your fear of becoming a “bag of bones that depletes my community,” and your friend holds you saying, “You are loved, caring for you is an honor.” Or when his mom calls and says, “This is not your fault. And we will be here every step of the way. You are not alone in this.” Did you cry because:

a) You imagined being loved even when your care is taxing, even when you have nothing to offer in return?

b) You were overcome by the possibility of not giving up on each other, even when it gets excruciatingly difficult?

c) For a moment the dream of the beloved community where no one is abandoned felt real inside your body?

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Thank you for taking the time to respond. You can expect our recommendations within one to two weeks via postal mail.