Pieces

The first part that fell off was my finger. My pinkie. It floated down the creek after I stooped down to feel the water’s cool flow.

I watched the little bit, the part just above the second knuckle, dappled with the forest light, bob and float away like a fat fish.

We had over a mile still left in the hike, this rendezvous I’d joined on a whim with my college friends. They were chatting in leggings ahead of me, hopping boulders. I was going a little slower. I liked to look at the ground a lot. 

Now I was afraid to look at my hand. I shoved it in my pocket and kept going but couldn’t say anything the rest of the trip.

At home, I took my hand out of my pocket and examined the finger. It was gone. In the car I had rubbed the puckered skin just above my knuckle. Flexing it constantly, feeling its absence. It didn’t feel like anything itself, like it was devoid of nerves. The skin that covered the nub was just a little scar with what looked like stretch marks around it.

I was as calm as could be expected. It didn’t hurt, and I thought, if things hurt, you go to the emergency room, right? If I wasn’t in pain then I didn’t need to do anything right away.

I called my doctor’s office and got in within the next few days.

My doctor was a short, middle-aged white man who didn’t know anything but was happy to write referrals and prescriptions. 

“So, my young fellow,” he always called me, after I told him that I’m trans and not to call me miss. Anyone else I wouldn’t have let this slide either, but I found it charming from him. “What seems to be wrong with you today? A finger injury?”

I showed him the stump. I saw the blood drain from his face, and some whim compelled me to wiggle it.

“It just … fell off?” 

I nodded and he turned his back to me, started searching the medical equivalent of Google. He was silent for about five minutes, furiously typing and clicking, while I started to become amused. I had tried typing the other day. It was annoying, but doable. Pinkies aren’t that important. Not having a fingernail, however, was strange.

He didn’t consult me before he called a phone number. “Yes, yes, I am making an appointment for my patient, Lars K. She needs to see Dr. Nik right away. We are in upstate New York.” He listened and looked over his shoulder at me. “Can you make it to New York City tomorrow?”

“No,” I laughed, jarred by his odd request and his misgendering. I hadn’t been called “she” for so long that I forgot how it sets you off half a step. Why would he choose now to refer to me that way? But also, who could just take a bus last minute like that?

“Okay, then they can meet virtually,” he said.

“I have a shift tomorrow,” I said.

“Okay, that works. 3 o’clock. Thank you.”

“What the hell?” It was like I hadn’t been in the room.

He turned back around to me with his balding head held low. His hands were tented in front of him and he lowered them as if he was defeated. “You have to take this appointment. It is important. You cannot put it off. Please.”

“Can you tell me what’s going on? I had to call off work for this.”

But he would not tell me, just talked seriously and told me what I needed to do. It was strange for him, so I agreed to his request.

I had all day to work myself into a frenzy, but I was calm enough. I had met with plenty of doctors, and they were all inscrutable and unpleasant. It happened with a body like mine. Born with all sorts of organs and tissue it didn’t need and I didn’t want. I had two surgeries within the past couple years, one to take out a uterus, the other to remove breasts. Before I could even do that, I had to meet with many other doctors who failed even to see that main issue. These extra things in the body, the waste they produced, the space they occupied in my mind.

Those things had been resolved, though, my body finally mine, and now I was waiting to find out what had happened to my finger. Normally, growths are the problem. I had once had a huge lymph node stick out of my armpit that caused me and a doctor consternation. Samples were taken, stress was had, tears were cried, and then the lymph node returned to its normal size for no obvious reason. But a loss like this, as long as it was painless and not too inconvenient, could not be too bad.

I joined a meeting for the doctor online and still had to wait well past the appointment time before finally he appeared.

He was also a small man, I think, at least he seemed in that video screen. “Hello, Lars, I am Dr. Nik. I am sorry to tell you that you have a most severe presentation of Rapid-Onset Severe Strictuderma.”

He paused. What a way to say hello.

“I have never heard of that.”

He nodded like of course he expected that. “It is an extreme tightening of the skin. See, what happens is that there are rings of skin that will just start to tighten. It happens, as far as I can tell, randomly. Now with things like your finger, which your doctor described to me yesterday, it happens like so: first, the nerves deaden. That is usually the first sign. Did you notice that?”

“No.” I had been hiking for a few hours, and my pinkie was not on my mind.

“Well, since you had no pain, I can only presume. Pay attention to that in the future. Then, your skin starts to constrict in a ring, like a drawstring, do you understand?”

I nodded. I couldn’t attach what he was describing to my own body, but I understood what he was saying.

“Within a few hours, that drawstring will draw itself completely taut. It will cut off all blood, bones, anything in its path and join with the rest of it, creating only a small scar and some stretching from the other skin which has had to pull itself around the area. That is what you experienced. That is, when your finger detached.”

I looked at my new nub. It appeared just as he said, but how could that be true? How could my own skin have lopped off my own finger without me noticing?

“Well, okay. So why am I talking to you?”

“I am the foremost expert on the disease. In fact, the only one. And it is relatively undescribed since it is so rare. It is not in any textbook, any diagnostic manual, yet. I have only found dozens of people with it, and so if anyone looks up these things, they find me.”

“So what, you want to study me or something probably?” I half rolled my eyes. I wouldn’t be studied. I didn’t care how rare it was.

“If you consent, that would be ideal. But no, unfortunately I have larger news to give you. The disease is progressive, and without intervention that medical science has yet to discover, I’m afraid it is fatal.”

I could do nothing but cock my head, as if maybe I hadn’t heard correctly, though I was fairly certain I had. “How can my pinkie falling off be progressive?”

“Not that your finger will spread, but that these constrictions will keep happening to you all over your body. You will lose more and more parts of yourself. Usually this happens many times before it becomes serious, often with fingers and limbs, things you can lose easily, but then, the skin will crush a major artery or organ. Sometimes that can be treated in hospital surgically, but that only extends life. Eventually, if not sooner, it will take something vital from you, and that will be fatal.”

I’m not too sure what was said after that, except that he gave some options, some steroids and things that might or might not work. He offered to send a technician from his lab to take my blood, measurements, anything they could use in order to make some scientific discovery from my important condition. But I refused everything. He didn’t seem surprised.

After the appointment, there was a message in my patient inbox, pointing me to a support group on Facebook.

***

I hadn’t had a Facebook profile for years, since transitioning. I didn’t want to associate with any of it, any of the weird family members who weren’t happy with my changes and felt an entitlement to my body, any of the high school classmates who had been so cruel. But I had to find out who these other people were, and I needed to know what to expect. I logged on with my old password, and everything was there as if I had never left. High school friends who now had children. Family members I hadn’t spoken to in years, who could now see me, with pictures of me from a decade ago. I couldn’t deal with that right now, so I deactivated my account again and created one from scratch.

The group was simply named, “Rapid-Onset Severe Strictuderma (ROSS) Support Group.” It was set to private, so no one could see who was in the group. I asked to join. There was an automatic question when you hit the button. It asked, “What was your first loss?” I said my left pinkie and hit send. The group almost immediately approved me.

There were forty members, and soon a post was made announcing me.

An administrator, Marissa L. said “Welcome Lars K. to the group!”

Likes and hearts flooded to the post and distracted me as I looked down farther into the group. Posts about body parts lost. Applying for disability in the United States. Comments from international members, “wow that is terrible. I just quit work; it has been fine.”

“Typing this with two fingers. Rest are gone.”

“Found a new wheelchair for tricks,” and a selfie of a person in a racing wheelchair with no legs and a chunk missing from their jaw.

I scrolled back up to the top and commented on the post, “I’m still reeling from this. Just lost one pinkie. I haven’t had anything else. What do I do?”

I hit send and immediately regretted it, feeling like a child. Who were these strangers to tell me what I could do?

“Have you talked to Dr. Nik?”

“your in the right place.”

The comments were inane, but still soothed me. There was nothing, no straightforward path, and these were the same people as any I’d meet on Facebook.

“Quit your job, honey. If you don’t, you’ll wish you did.”

So I quit the next day.

I went on disability soon after. I had been around when my father tried to get disability after his cancer diagnosis. It took until he was well into stage four to approve him. I started to realize how bad my condition was when they approved me right away.

It was strange to suddenly be thrown into this when nothing felt wrong with me. It was just one finger gone. I never hurt. I never had a painful surgery or felt so horrible in my body that I couldn’t bear to change my clothes for work and be confronted with my own skin. Yet I’d been expected to get on with life when those things had happened to me. But with a painless excision of a relatively unnecessary body part, I had crossed the line from healthy, productive worker to an ill person supported by the state. It wasn’t a terrible way to live, except, if the doctor was right, I was, at some accelerated pace, dying. 

So I spent a lot of time online, on Google Scholar, PubMed, sure there must be something out there for me. I had studied history in undergrad, I hadn’t even done very well as I liked stories more than details, and I had no reason to think I could interpret medical literature better than Dr. Nik, the foremost doctor on the topic. I couldn’t even find a paper on the condition without his name on it. So, I had to just decide to sit back, and try to figure out how to tell my friends why I had suddenly quit work. I had never managed a real vacation before. Maybe this time could be fun.

***

I had been unemployed for a week when the index and middle fingers of my right hand went numb.

A pinkie may go unnoticed, but you feel it when your first two fingers lose sensation. One moment I was typing, looking up something irrelevant online I’m sure, the next, there they were, dead on the keys. I thought at first, I must have let them fall asleep somehow. Poor posture. Bad typing hygiene. But soon after that, I saw the beginning of a lighter ring form around them arcing from between my thumb to the fold between my middle and ring finger.

“Fuck, no no no.” I started swearing and rubbing at my hand. Below the ring, my hand was becoming hot and irritated. Above it, no sensation. I tried to curl them, I tried to warm them, anything, but the ring started constricting, pulling the skin taught, like pulling a piece of floss through dough, and then, like I had dropped something weighty, my fingers flopped down onto the table.

I put the fingers on the desk beside my laptop and went to Facebook. I typed out far too slowly, “My first two fingers came off my main hand. What do I do?”

Again, that useless question I couldn’t help but ask.

Janice U. commented, “God only takes what we don’t need.” 

“Fuck off, Janice,” I said under my breath, but I liked her comment. It was polite.

No one commented for a while, so I took a picture of the two fingers and posted that. It was immediately flagged for review and removed.

Marissa L. commented, “Look at the rules before you post again. That is in violation of the group rules, no disembodied parts.”

“What am I supposed to do with these fingers though?” I asked. It was almost comical; those were the same words I had used right before I fingered my first girlfriend.

“I don’t like to think of them. Throw them in the trash, I say,” said Janice U.

“I bury them,” said Shiv V.

“I don’t know either. I have been putting them in my freezer, but if I lose another limb, I’ll have to get a deep freeze,” said Urie R.

I couldn’t bring myself to touch them. They had turned into miniature dead bodies themselves. Blood was pooling on the underside, turning the palm side of the fingers darker.

I couldn’t help wondering if there was some cosmic power who knew just how to hurt me. These weren’t just any fingers. An ex and I had called them my “fucking fingers.” So if I slammed my hand in a car door, we laughed and talked about my dick breaking. It truly did damage my sex life for a while when they were hurt. Now my dick was gone. The only thing that kept me from converting was that my pinkie had never done anything to anyone.

Still there was something fascinating about the fingers there, a part of me, or were they? I thought about my pinkie that had floated away in the river. What would this do in water? If I took it to the lake? If I fed the fishes with it. Would I feel it if they ate them? Surely not, the nerves were severed. But what if I ignored that logic, if I tried to curl my fingers in the way that made my ex squirm.

My thoughts were interrupted by a chime from a Facebook message request. I saw something from a name I didn’t recognize: Naisha B.

“Here is my first part,” followed by an image of half a foot. The foot had pale brown skin, with the same pooling of blood at the bottom I saw in my fingers.

I accepted the message request.

“Why aren’t we allowed to post the parts on the page?”

She sent a shrugging emoji. “People don’t like them. Reminds them that what’s left of their bodies will eventually be that.”

“How long have you had it? The disease.”

There was a longer pause. “17 years.”

My heart thrilled. “That’s a long time! I didn’t know we could live that long.”

She was typing for a while before she sent, “It doesn’t matter how long. We’re already dead.”

Her words chilled me, but I didn’t want to stop talking to her. The other conversations I’d had on the page felt somehow unreal, like we were all politely dancing around a truth, but this didn’t. “What do you mean?”

She sent a picture of a strange gray lump. It looked like a pea. There was a stack of them.

“What are those?”

“They’re called globuderma. Flesh balls. When the skin constricts in on tiny flesh parts. Creates these pebbles, big or small. I’ve mostly had them. These things are dead, and they are me. I’m already dead. And how alive can you be when at any moment your skin can become a noose?”

I saw her point, though I wish I didn’t.

“It’s late here,” she said. “I’m going to bed.”

“Where are you?” It was full sun outside in New York.

“Maldives. Send me pics if anything else falls off.”

***

My friends could have been forgiven for not noticing my pinkie fall off, but even casual acquaintances would have noticed that half of my dominant hand was missing.

I told them that I’d had an accident. It was a spur of the moment decision, but I didn’t know how to explain what was happening to me. It seemed overwhelmingly tiring, and I had to explain so much in my life already. These were college friends who’d stuck with me, through transition and surgeries, through alienation from my family, who always loved me, but didn’t always understand me. They could take more explanations, but I couldn’t handle supplying them.

So I reached out to my last ex.

I’d had a good track record with my exes. Breakups were hard, but mostly things just didn’t work out and we managed to stay friends. I met my last ex, Manny, at a bar soon after my top surgery. We’d moved in immediately and then broke up after a year, when it became clear our lives didn’t mesh. That’s how it always felt to me, like I was trying to make myself fit with everyone, and something just didn’t go. Like I’d lived too many lives and I just needed to pick one. I hadn’t dated in the months since we broke up.

Manny met me at a restaurant for lunch. I hid my hands under the table while I told him about the diagnosis.

“I don’t understand,” he said. “What does that mean?”

“It means my pinkie just fell off. And then a part of my hand. And parts will just keep falling off. Randomly, I guess.”

“Show me.”

I lifted my hands sheepishly, and he reached across the table for them. He held my right hand, running his thumb along the scar. “Oh, honey.”

I didn’t expect it, but I started to tear up. He held my hand tight and came over to my side of the booth to hug me. I put my hands over my face; I could never cry properly while someone was watching, and he rubbed my back. When our food came, he stayed next to me.

“How are you writing?”

I laughed. “Who writes anymore? Typing is slow. I can do anything, I think, I just have to get used to it.” I demonstrated how I used the fork on a French fry.

He noticed my other hand, the pinkie gone. “So wait, you’ve lost … two parts of your hands. And it’s going to … just keep happening?”

I nodded.

He nearly jumped out of the seat. “That’s it then! We’ve gotta go to the doctor, we have to start some sort of treatment immediately.”

“Manny, Manny, calm down. I have already talked to the doctor. This is it.”

“No, no it’s not it, we’re not just going to sit here until you turn into what? A fucking head in a jar?”

“We’re not just sitting here Manny, I’m dealing with it, I’m living my life, I’m doing what I have to do.”

“Bullshit,” he said.

“Manny, I—”

“No, you listen.” He started on a rant about doctors not listening to trans patients, how we need to fight for healthcare. He was so loud that other diners were looking at us and a waiter appeared on the verge of asking him to lower his voice.

I used to love that Manny fought like this. He fought strangers for calling us fags, he fought insurance to pay for my top surgery after they balked, but he also fought me, even when I wasn’t fighting. And I wasn’t fighting this. I waited for him to stop, knowing I couldn’t outshout him, and not wanting to try.

“I didn’t call you to do this Manny. I just … I just wanted support. And to tell someone. I didn’t know how to tell anyone else.”

He calmed down at that. “You want me to tell them.” An action item. He loved those.

“No, just. I just needed to tell someone who knows me.”

He looked down at his food. He tried to take a bite but couldn’t. “I don’t know. I can’t just do nothing.”

I kept eating my burger, staying quiet and he got the bill.

***

I couldn’t expect anyone to just accept it. I learned that when I came out as trans. Everyone has a reaction. They are entitled to their feelings, as I had heard from friends and therapists, family members. But I was tired of their feelings, them catching up, or never catching up. I didn’t have time now to teach them, or at least I didn’t know how much time, and I wasn’t going to waste it on people who couldn’t listen.

I messaged Naisha B. “I tried to tell my ex about it. Didn’t go well.”

She got back to me hours later. “Yeah, it doesn’t tend to.”

“It has fuck all to do with him. He doesn’t know anything and yet he tells me what to do?”

“When I told my mother, she took me to every doctor on the islands. Not many, but it has distinctive enough symptoms that it didn’t take me long to realize I’m screwed.”

“I’m sorry.” I couldn’t think of anything else to say and our conversation died out.

***

I spent months trying to keep up with my friends, monitoring my body constantly, compulsively touching myself, looking for places with a sudden loss of sensation. I was paranoid about it happening while I was out, far from home, nowhere to retreat to, so I started limiting my range of travel so I was never more than an hour from my bed. It paid off when one day at a bookstore, my left shoulder turned numb.

I fled home and called Dr. Nik. The nurse patched me through after a harrowing ten-minute wait. He listened as I described the area. I was crying.

“I’m so sorry, but this is how it is happening for you.”

“It’s huge,” I cried. “It’s my whole arm. This is only the third time.”

He let me cry on my end of the line. I wondered how many times he had been here. “I’m so sorry. This is not unheard of. Some people are unlucky and the disease progresses much more rapidly. If you have any complications, please go to the ER. But I think you will survive this.”

I cried, thanking him and hung up.

***

The arm was weighty. Somehow holding it in my right hand, it felt longer than I would have imagined. A whole arm, minus a pinky. Not many people could say that they had held their arm like this.

I took a picture and sent it to Naisha B.

An hour later she sent back a flexed arm emoji.

I laughed out loud in my apartment, the sound echoing off the walls. “How could you be so callous?” I fumbled with my right hand on my phone. At least I was an experienced texter, but without my first fingers, I had to put the phone on the table to use it.

“Come on, you knew it would happen.”

“I only have three fingers now.”

“How many do you need? Isn’t one a thumb? That’s plenty.”

She was brilliantly unfazed. I imagine that’s what happens after so many years under the guillotine. I sent her another picture, of how the blood had pooled and the gradations of the arm. She said it looked weird on white skin. More dramatic. Or maybe I was just more dramatic. We kept chatting, her words creating a bubble around my phone, sheltering me from the solitude of the apartment. Her brother owned a family resort on a different island and supported her, so she spent her days outside, by the beach, or inside, reading and thinking. I asked her if she ever wrote and she said no. She had nothing for anyone to read. Her situation was so singular, how could she write something that people could understand?

“I understand it. And others would too. You could make them understand.”

“I’m not interested.”

I never understood that about her. Naisha B. had lived a life that no one on earth could have compared to themselves. She spent her time in contemplation about death and sickness, ability and illness. She helped me process my own illness but did not talk about herself much. She was aware that even in a rare situation, the course of her illness was rarer still. It gave her insight, but she did not feel she could share it too much with the rest of us because it gave false hope, jealousy, or other complicated emotions. I wasn’t the first person she had connected with in this way, but the others had died, and Naisha B. still lived. Sometimes I became jealous or panicked when I imagined her taking other people into her confidence, or imagining them dying and leaving her as I would likely do as well. Yet I could not imagine having to exist without her anymore. It seemed like she knew more about life than I ever hoped to understand, and that soothed me whenever we talked. That night I was able to sleep as deeply as the night before.

***

It took me a while to leave home after my arm fell off. I had no idea what to do with it. I had frozen the part of my hand, mainly out of a lack of other ideas, but the arm was too big to fit in my half freezer. I had to think quickly, before it turned strange. I did not want to find out what happened to an arm that, while completely sealed in skin, was also dead. I’m sure Dr. Nik knew what happened, or would like to study it, but I was still adamantly against using my body for research. I didn’t know who else to call, but since I didn’t know how to dig with only one hand, I finally called Manny.

I knew he would be upset, and he was. While he was raving around my kitchen, I had a notion to pick up the arm and slap him with it. But I just laughed at my own joke, and when he finally calmed I asked him to dig a hole in the back garden and help me hold a funeral.

I should have but did not expect him to start crying then.

“It’s like you’re dying,” he said.

He had his head in his hands at the table, and I leaned over him, hugging him. “I’m right here, honey.”

We stayed like that a while before he agreed. He found a shovel in the shared basement of the house and dug a hole in the backyard. My downstairs neighbor started yelling at us, and paled when he saw me holding the arm.

“I’ll get him,” said Manny, and he walked the neighbor inside.

The hole was mostly dug, and so I placed the arm uncovered in it, as well as the frozen hand part that I had saved. “You were a good hand,” I thought, and I couldn’t help laughing. But as the breeze blew over my skin and ruffled the grass, throwing some stray dirt onto my arm, I sobered. I had one left arm and there it was.

I had one uterus once, and two breasts, heavy with tissue. They had been removed, not unceremoniously, but with no funeral, no grieving process. I tried to muster something for them as well. After all, they had been good and functional body parts, just not for me, never for me. I had not thought of them after they were gone, the same way I don’t think about a turd after it’s flushed away. It was medical waste, and it was treated like such. But this arm was me.

Dr. Nik had explained that people with ROSS rarely had phantom limb syndrome. He postulated it was because of the preceding nerve death, and I certainly hadn’t had pain or sensation in my missing fingers, or yet with my arm. But there was a part of me that still felt a connection to the disconnected limb. I closed my eyes and tried to feel down that connection, as if it was real, hoping quietly that it might be real. I creeped my consciousness down the tenuous thread, and thought for a moment, maybe, was that the wind blowing the hair on my left arm?

Manny came back out with the neighbor. “This is weird, but could you show him your hand and arm?”

“They’re down there.”

“No, the ones you still have.”

The neighbor studied the scar along my hand and I pulled back my sleeve so he could see the shoulder. He looked down at the limbs in the hole. “This is some freaky shit, man,” he said.

I nodded. “Yep.”

Manny said, “Okay, we good? You need to call the cops still?”

“I guess not. Good luck, man,” he said, and went back inside.

We looked down for a bit before Manny asked, “You want to say anything?”

“Do you think my fingernails will get dirty?”

“That’s not what I meant.”

“I hate dirty fingernails.”

“I know.” He grabbed my right hand. 

“Do you want to say anything? You knew it pretty well, too.”

He cleared his throat. “I liked to hold your hand. Either one, but this one was good. And I liked the hugs, with both arms. But one arm is still good. I know Lars is right-handed, but you still gave the best handjobs.”

I smacked him in the side. I knew I could keep calling him if I needed anything. I kicked dirt over the arm, and he picked up the shovel and finished the job.

***

I checked the support group on Facebook, as I did every morning, to see what was new. Since I had joined the group, some had died. There were people who lost parts at a clip as fast, even faster, than I did. Even though I ostensibly had something more in common with these people, I rarely posted or commented anymore, choosing instead to talk directly to Naisha B.

I told her about the funeral. She was disappointed I hadn’t photographed the grave, so I promised to do at least another one in the future. It somehow made that future seem less horrific. I spent a lot of time thinking about what things I would tell Naisha B. I imagined her reading them on her phone on the beach, though usually it was night for her when we talked. The whole island she lived on knew about ROSS; she was a local legend. She hated it. She said that one day she hoped her head fell off in the middle of the public pier. Her ability to say these things shocked and thrilled me. She meant them honestly.

I didn’t think too much about Naisha B.’s appearance. I knew she was older than me by at least a decade from the high school graduation date on her Facebook page, but she didn’t have other information, or photos. I knew she had light brown skin from the images of her disembodied body parts. Sometimes I would imagine this middle-aged brown woman reading on the beach before realizing the woman was some actor I had seen in a movie.

I had been practiced in this erasure of the body from my own experience. When I pictured myself in my own mind, I was a blur of white skin and fat, particularly before top surgery. Even after transition, when I had the changes I had wanted, instead of seeing the body in my head, I saw nothing. I wasn’t dysmorphic; I looked in the mirror and saw my body as it was. But in my head, I was pleasantly free.

Naisha B. understood this when I tried to explain it to her. “I don’t picture you either. Or more, I can’t imagine a person like you physically.” The words made a rush of warmth gather in my throat. I couldn’t ask for better to both be perceived, and to leave the body behind.

We had gotten into a rhythm. I messaged her when I woke, and usually she was already most of the way through her day and we chatted. If we weren’t already talking, she would also message me when she was going to sleep, to chat and check up and say goodnight. One day, she did not do that.

It was the day that I had decided to tell my friends the truth. I had gathered a few of the closest ones. A missing arm is immediately noticed, and so there was no soft lead-in to the conversation. But they amazed me with the grace they collectively gave me. I found myself crying, inadvertently, and they sheltered me, pledging their support, inviting me out, inviting me into their homes if I needed. I was overwhelmed with emotion and annoyed with myself that I had kept them out of my life, and so I didn’t notice that Naisha B. hadn’t messaged me until I was in bed myself.

Things happen that prevent people from contacting each other. Perfectly normal, not dying things. Despite my worry, I said good night, and let myself sleep. But the next morning she still had not said anything, and I panicked. I sent message after message, imploring her to respond if it was at all possible. Telling her where my mind was gone, and how I needed to know what was happening. I sent incessant messages for thirty minutes, my thoughts racing, my three fingers tap, tap, tapping to keep them from settling on the one conclusion I couldn’t avoid.

My phone started vibrating and a banner popped up at the top. I was getting a Facebook Messenger call from Naisha B.

I answered it quickly, but for a moment, could not speak. I realized that this was new, something that asserted our physicality in a way I didn’t want.

“Hello?” I flinched. My voice sounded high and scared.

“I’m sorry Lars.” Her voice was low and smooth. She started talking, explaining what had happened, but it took me a while to get past her voice. She had an unrecognizable accent, probably because I hadn’t met anyone before from the Maldives. Her voice lilted and pitched slightly, but she kept it calm, low, partly naturally, and partly, I could tell, to soothe herself. She had apparently, yesterday, lost her last arm. In fact, it had constricted so high on her neck that she had been sent in a seaplane to the largest hospital in the country to monitor her to see how it affected her and if it had damaged any organs in the process. She was calling me from the hospital.

She finished with, “I’m sorry, my English is not as smooth talking as typing.”

I wiped my cheeks. “No, it’s very good. I heard you fine. How did you call?”

“I asked my brother to keep my phone on this table that comes up over me. I can bend and press it with my nose.”

I laughed at the unexpectedness of that, and she laughed at my laugh. “I’m so sorry,” I said.

We were silent for a long time, and I could hear her crying. “I shouldn’t be this upset. I know this is what it is. I had become too comfortable. I’m crying in front of you, who has lost so much so quickly.”

“It’s okay.” I wanted to give her more, the way she had given me a whole framework around which to experience the disease, a way to feel about my body dropping away. But I had nothing that she didn’t already know. I could only sit there with her.

I told her about how my friends had taken the news so well. That of all the things I was scared about now, I knew I didn’t have to worry about caretaking. That she also had a support system there. I kept talking until a nurse came into the room to check on her. The nurse picked up the phone to hang up on me, and before the call ended, I heard them talking in Dhivehi, Naisha B.’s voice sounding so far away.

***

After that, we talked on Messenger calls—voice only—at the same times of day. After she had returned home and the shock had dissipated for her, things were close to the same as they had been. She sent me a picture of the arm sitting in the late sun on the patio. She complained about the hours of work and effort it had taken to try to do it herself, and how, when she finally gathered enough nerve to ask her new aide to do it, she had just picked up the arm like any piece of meat, placed it, and taken the picture. 

It was odd to have our roles reversed, for me to be comforting Naisha B., but it also felt gratifying. To hear her voice uncoil as we talked. To be able to be together, our breaths flowing as if into each other over the phone, while we sat, reading or doing other things. And I was happy to not have to type as much anymore. Even though I was getting used to it, typing and maneuvering the phone with only three fingers was still difficult.

Manny started to come over and help around the house. I didn’t ask him, and at first, I wanted to turn him away, but I couldn’t deny how soothing it was to have the corners dusted, the books back on the shelves. He made me food; I had missed his black beans and rice desperately. My other friends would ask if they could come over every week or so and we’d have dinner, lavish ones, with overflowing food and alcohol, conversation into the night.

It felt like, I imagined, living a life, finally.

***

The sun was drifting through the window, the motes dancing. A beautiful day in a dreary city with few beautiful days. I stretched awake, and I noticed that my torso, in a circle around my armpits, was numb.

What a stupidly dramatic way to go.

I stood, worried somehow that my shoulders would slide right off my chest. It must have been early in the process though because there was no constricting line yet, just the numbness. I called Naisha B.

She picked up; it was a normal time to call. “Hello, lovely.”

“Naisha, it’s bad.” I explained the situation. She was silent.

“It’s not that bad,” she said.

She could always make me laugh.

“It will be quick. You won’t feel too much of anything. You don’t have to go to hospital.”

I started to cry, the realization welling within me. Death is never an idea you become accustomed to, even as it shakes you.

“I’ll be here, on the phone with you, if you want that.”

I nodded, though she couldn’t see.

“Do you want that?”

“Yes. I do.”

“Do we need to call Manny?”

“No, please. Don’t let him see. Don’t let him find me. Would you be able to call the police and tell them to find me?”

She agreed, and had her aide look up the number and made sure she had my address. I unlocked the apartment door. There was no need for a fuss.

“I’m sorry, I won’t be able to send you more photos,” I said.

“It is okay. I don’t need to see you. I never did.”

“I don’t know what to do,” I whispered.

“It’s easy. It’s natural. How about this: Go lay down in bed. Or wherever you would like.”

I got into bed and pulled the covers up to my chin.

It all ends right when it starts, I thought.

I touched my skin and could feel the indentation of the constriction starting. “Oh no, oh no.”

Naisha B. started humming, soothingly, an unfamiliar melody. I hadn’t heard her do that before. There was so much of her I did not know.

“I don’t want to stop feeling, to stop experiencing.”

“Maybe you won’t. We don’t know what happens after death.”

I thought back to my arm, lying in the dirt. I told Naisha the feeling of the wind on the hairs, the dirt on the skin I would have sworn I could feel. 

“Ay, do you want to be a disembodied head and shoulders walking around?”

I laughed involuntarily. “No, but I don’t want to die, I don’t want to be gone.”

Breathing was starting to feel more difficult. I looked down and could see the band, compressing my sternum, crushing my ribs.

“Okay, lovely. Then feel this. I’m here, on my patio. Overlooking the ocean. It’s beautiful, the sun is low, and the water is halfway up the sand. It’s breezy.”

“I can hear it.”

“Feel it. Feel me. You won’t end, if you don’t want. What is a body? Your body didn’t work, find a new one. Mine won’t work, I’ll find a new one. Feel mine. Feel the wind, the warmth. Feel it on your cheeks. There are birds, but I don’t know them, I never liked them much. But they have a call that’s like a melodic cry.”

I lay, my eyes closed, my breathing tightening. To think about death for more than a moment, even as it rushed towards me, was unbearable. I gave over to her voice. All in a moment, I could feel it. I felt my being dissolve, loosen, join the atmosphere. I felt myself following the line of her voice, across thousands of miles of land and ocean. I felt it all. The concrete patio dusted with sand beneath my feet. The wind blowing over the hair on my head, my lashes. The sea breeze, salty, clean, with the slightest taste of seaweed. The sun on my cheeks.

“Lars? Lars?” Naisha B.’s voice trilled with worry, echoing round my head. The taste of her breath lingered in my mouth. What a sensation. What love.

With my last exhalation, through whose lips I’m unsure, I said, “I’m here.”