Visionary Week Two: Give In

A few days in, I am going crazy again. Taking the T makes me feel listless all day. I wake up early, run every morning. I struggle to stay awake and wear sunglasses. I take breaks every five to ten minutes, closing my eyes as the world spins and blurrs in and out and the headaches make me want to cry–not from pain, but over how helpless I feel.

My boss and I sit down and we work out a schedule where I am only in the office for part of the day. I’ll go home, and then work more after taking a nap.

At work. I align things on my desk, so I can practice looking at them. They’re positioned so that if I focus with my right eye, things look one way, the object in the front covers the objects and lines behind it in a way different than when i focus with my left eye. I try to get the objects to align in neither way, to find the space in between.

Edges are blurry. NN tells me that babies have trouble identifying edges when they’re learning to see. This is a good sign, she says.

I didn’t want to have to need more dispensations for work. When I leave the office, with everyone else hunched over their desks, I feel like I am cheating. I am doing something I am not supposed to be. I sneak out. I don’t say goodbye or even acknowledge that I am leaving.

When I get home, I take a nap and then pace around the house like a ghost. I work in the stretches I can focus for. I pace. After it’s dark, I go running. It’s the thing I have. It’s the thing I can do. Every day I wait until the end of it, finding comfort in the knowledge that I’ll be able to close my eyes and sleep.

Vistionary Week Two: Work

I return to work on a Monday. It’s been a little over a week since the surgery. The concept of work, the pervasive culture of being an employee, of defining myself by my employer, has consumed me.

When I go to parties, people ask what I do and I in turn ask what they do. It’s small talk, in a form where we hope someone will say something we can latch on to. It’s something we can be genuinely interested in–in the Camberville world where social connections are key to success or in an honest sense of curiosity. Regardless, I have bought into it and I feel bad, deeply, critically bad, for missing out on a week of work.

Missing out.

I return to the office, with eyes still marked from the red blotches of blood and painful black stitches. The sunlight is too bright, and I wear a hat pulled down low over my face. I take the T and I want to sit down, but I don’t, because it is crowded and I look healthy. To someone who doesn’t know how much the world sways and blurs when I try to look at it, I appear healthy.

Everyone greets me in the office and my discomfort is caused not just by the green florescent lights–which I never liked in the first place–but their concern. I warned them, in a short e-mail before my return, explaining that I had surgery, was fine, happy to talk about it, but I’d really like to be able to focus on getting back to work and catching up on everything I missed.

Catching up.

Work doesn’t slow down when you’re injured. Things pile up and wait for you to take them back on and over and over again in my head, over the dizziness, nausea, and headaches, I tell myself that this is what I need to do.

I sit down at my computer and power it up. The text is unreadable.

Visionary Week One: Activity

I clean the kitchen.

It’s really all I can do and still feel productive. Producing something. In this case, I am producing a cleaner kitchen. 

Our house is full of people nearly constantly. As a result, it is also full of mess nearly constantly. After one meal is cleaned up, someone else is baking bread or chopping all the vegetables. Once the cups are cleared from the living room, more cups of coffee, beer, and wine find their way to the tables and floor. Things get shoved onto already crowded shelves. Things get lost in cabinets. Things spill on the floor, and there is too much activity to fix it at the time. By the time it is quiet, we’re all too tired.

So, the kitchen is a mess, and I clean it.

I do the dishes. I move the chairs and the table. I sweep and mop and scrub and bleach the floor. I empty the cabinets and wipe down the shelves in them. I rearrange containers. I do this because there is nothing else I can do.

I have trouble seeing the floor. It has these “stain hiding patterns” on it, which is nice when you’re lazy, but frustrating when it’s a blurred mess of grey and brown and beige. Just looking at it makes my head spin. The smell of bleach is oddly calming. It centers me.

One day, I clean the kitchen. The next I clean the bathroom, and the kitchen. The following I clean the living room, and the kitchen. Every day the kitchen needs some time.

I cook too much food, because I know how to cook food. I couldn’t do it in my sleep, per se, but I can do it without looking, I learn. Our oven is broken–the knob for the temperature setting is anyway–so I bake next door. 

I tend to the plants. I repot and water them. I try and kill as many of the pests that found their way through the windows into the air. I set traps for some, and chase after others.

I try taking care of myself. These are activities that are foreign to me. I make clay face masks, which stain my skin a ruddy shade of red, making me look excited and sunned, even though it wasn’t the desired effect. I do yoga even day, even though it makes my head hurt when I move too quickly. I look at myself in the mirror and try to become comfortable with my face and body even though neither of these things seem to happen.

I go back to cleaning–sweeping the hallway. I wash the walls and take a toothbrush to the tiles. I clean bicycle chains and frames. I wipe off the top of the molding around the doors and windows. I climb onto the counter top to take the little dead leaves off one of the wandering jews. I brush off the dust on each of the leaves individually.

Each day I watch my efforts fade slightly, as the apartment is lived in again

Visionary Week One: Difficulty

Day one is miserable. I pry my eyes open. It’s an effort that involves my hands. W insists I need gauze to clean the whatever dried stuff builds up in your eyes–it’s like sleep sand but worse. So thick it holds everything together. There’s dried blood in it. V gets some gauze. Throughout the day (and days following) my eyes will issue discharge of all different colors and viscosities. There will be liquid in clear, yellow, and red, slightly thicker in green and yellow. There will be thick mucus in white, orange, and green. Things will dry and flake off as I blink or when I rub my eyes. It will get caught in the tear ducts, eyelashes, and along the smooth skin in the lower fold of my eye.

In order to combat this, every day I will put drops in my eyes–twice a day. I force my eyes open–they are also swollen–and W puts the steroid drops in. They leak through the mucosal system and I can taste it in the back of my throat. The back of my throat hurts. I can feel something in it and I cough and it won’t come out.

I nap. We eat. I nap some more. I practice looking at things. I feel like a child. My housemates and friends move in and out of the house. They talk to me and entertain me and I try very hard to stay awake, but my face hurts, my head hurts, my throat hurts, and I -want- to sleep. I want to sleep so it will all go away.

I have double vision. I take delight in it. There are two PTs, I say. I giggle when W has two heads and three hands. V has more hair than ever before. I had been scared of double vision, of that visual confusion, but the world manages to make sense with two of most things. I take a bit of comfort in it, even, knowing that my eyes are both working, both looking in the same place.

In the evening I push to go to dinner at a friend’s. Some of our European friends are in town and they’re grilling three blocks down the street. I can make it, I am confident. I go outside for the first time, in the twilight, and I am scared.

Too much is going on in the world around me. There is too much input. Visual data, I start to call it. I use machine terms–terms from computers and technology–to refer to my world post-surgery. It makes more sense that way, it removes it from being a biological process and turns it into a mechanical one. I take some comfort in this, in turning it into a hard, cold creation rather than a soft, warm thing I am a part of.

W leads me down the street. I talk to people. I eat even though I am not hungry. AO is welcoming and asks questions. It’s early, so I don’t mind talking about the surgery. I didn’t tell many of my friends about it beforehand, and brushed off details, because I didn’t want them to make a big deal out of it. I didn’t want to rehash the conversation, explain what I know about the surgery and vision again and again and again. But on day one, I don’t mind talking. I tell the Europeans about it. They’re in the category of people I like a lot, rarely get to see, and talk to infrequently. I think of them fondly and often. Their concern and interest is something I am happy to be covered in.

It doesn’t take very long for me to feel burnt out and run over. Everything, talking, eating, thinking is more difficult. There is more in it to process and take apart. I am trying so hard with all the visual data that everything is slower. Being out, spending time with people, drives that in a very real way.

I push and I pretend and eventually I can’t anymore. AO helps us navigate our way out of the back yard, W takes me home, and I go to sleep.

 

 

Visionary Week One: Bedside Manner

These are titled “Week One” because I wrote them during the first week. -M.

Waking up from anesthesia is a lot like being drunk. You think you’re fine, everyone else knows you’re not. Time is weird. Your voice sounds far away. You kind of want to vomit, pee, and are really hungry and thirsty all at once.

When I woke up, my head was wrapped in a series of bandages. My face and throat hurt. I couldn’t open my eyes, but then they were open, and then they were closed again and I’m sure I was in control of this, but it didn’t feel that way. There was muted white light coming through the gauze.

“Do you want W?” Someone asked me.

“Sure,” I said.

“She’s asking for you,” I heard someone tell him. Maybe they didn’t really. Maybe they did it far away and I shouldn’t have heard. I don’t really know.

I think he came in. I think he sat there. I think he had his laptop out. I went in and out of consciousness.

Doctors came in and took off some bandages. I was awake for a while. I looked around and it hurt. They shined things in my eyes and it hurt. They pulled tape off my face–tape that had been holding the loose ends of the stitches to my cheeks. W tells me that when I move my eyes, these black threads shift behind the eyeball, disappearing into the socket. He says it’s weird.

The doctors try to come back to get me to do something. I try. Instead, I fall asleep.

“I’ll come back in an hour and a half,” Dr. C says. “Try to look at things.”

Someone asks me how I’m doing.

“I’m very sharp,” I tell them. “I’m bored.”

“Do you want some juice?”

“I don’t like juice. I like tang.”

“I have orange juice.”

“I don’t like orange juice.”

“I have cranberry and apple.”

“I like cranberry.”

She gives me cranberry juice. I sip at it. Someone puts a quarter of a cracker in my mouth.

“This is the fancy stuff,” someone says. “Whole wheat.”

Dr. C says something to try and get me going.

“I’m bored,” I say. “I’m very sharp.”

“Let’s adjust those sutures. We can get you home.”

“My body is very good at trauma,” I tell him.

“Tell me about that,” he says.

“When I had mu IUD put in…”

“Woah,” he stops me. “Woah.”

“You’re a medical professional,” I say. “I should be able to talk about a medical procedure.”

Someone else objects.

“You’re all medical professionals. You’ve asked me like twenty times today if I am on birth control or could be pregnant or when my last menstrual cycle was. I’m allowed to say I got an IUD put in if you expressly ask me if I have had sex since my last period.”

“She’s got a point,” someone says.

“My point,” I say, “is that I rode my bike that evening.”

“Not everyone is that lucky,” a woman says. “I wasn’t.”

I think I smile.

“You need to leave for this,” someone says to W. He does.

They pull the bandages off again and scold me for sleeping. For not looking at things. I’ve been struggling to stay awake. I know that. It’s hard. I wake up, ready to go, and then give up a few minutes later. False starts.

They put some drops in my eye and shine lights at me. They congratulate each other for how close they got the alignment. They congratulate me, as though I was doing anything during the procedure other than be unconscious. I liked that part. I don’t like the part where the forceps come close to my eye. They move the sutures. I feel a tugging. It doesn’t hurt, but it’s annoying. It’s an eyelash in my eye, except it’s a piece of string and it won’t go away.

They put more drops in my eye.

The medical student stands near me. Pre-op, he came and introduced himself. I asked him how he felt about neuro-ophthalmology, and he told me he was going to be an ophthalmologist. I wanted to make a joke about him being cute, but it felt cheesy and weird. And creepy. I didn’t ask him how old he was, but I did tell him that the average age of matriculation into medical school is 24. “I don’t know the median,” said. I explained that when I’m nervous, I tell people facts. I like facts. He told me not to worry. He told me that in 2014, there were 412 more medical school graduates than residencies available.

“Do you need more drops?” Someone asks me. I try to shake my head but I can’t.

“I’m fine,” I say.

They have me look and they shine lights. They pull at things. They tell me to keep my eyes straight. I don’t like the pressure and ask for more drops. I hate needing the drops, but I do. I need two drops of liquid to fall on my eye and numb it. It’s dry. It’s irritated. More drops.

“Over use can burn corneas,” someone explains to the medical student.

“Why are you telling him that when I can hear you?” I ask. “Now I don’t want them.”

More drops.

The medical student holds my hand as they work on the last of the sutures. Adjusting and tightening them.

“Don’t squeeze him too hard,” Dr. C says. “He’s going to be a surgeon.”

“An ophthalmologist,” I say.

“It’s fine,” the medical student says. “She’s fine. I’m fine.”

They put ointment on my eyes.

“It softens the stitches,” someone says to me.

My eyes hurt. My throat hurts. My head hurts. I have to pee. I really, really, really have to pee.

“I need to pee,” I say.

They tell me we’ll be ready in a minute, but they need to explain after care to me. “No,” I said. “I need to pee.”

They hand me a bag with my clothes in it and usher me to the bathroom. I come back out in my normal clothes. I put the little green hospital slipper socks into the bag I get to keep.

Someone explains when to use the steroid eye drops and the stitches softening ointment. I tell W to tell the receptionist to call the valet. He says we can get the car when we get down there. The nurse tells him that they’ll have it waiting for us, so I don’t have to wait.

I want to puke.

They put me in a wheel chair. I think someone is pushing it, but I try to wheel myself around. I make a hard turn into an elevator, spinning the right wheel forward and the left one backwards. I’m pretty sure I look cool.

I get into the car. It’s R and R’s car. They lent it to us. It’s red. I know it’s ours because it’s red and has a hatchback and a Mass Audubon sticker. Mostly I know it’s ours because it’s bright red.

The whole world is very bright.

W takes me home. The car is too hot. I’m tired. I fall asleep. The ride takes too long and I’m too hot and now I want to puke again. I try to open a window, but I fall asleep before I can do it.

He helps me out of the car and into the house. Or someone does. I don’t know. I think I take my shoes off at the door. I don’t know. I get to my room and lie down.

“I’m going to park the car,” W says. “Will you be okay?”

I go to sleep.

W is gone when I wake up and it seems like it must be later and he’s not there and I don’t like it. Opening my eyes hurts. There is too much dried biological, organismic gook on them. I force them open with my hands. I’m thirsty. I think there’s water near me or maybe I get it from the bathroom. Moving makes me want to puke. I don’t like moving.

I fall asleep.

W comes home. I think it’s dark. It might now be. He picked up my medical from MIT Medical. The pharmacy where it’s $10 and my insurance is on file. “I had to tell them when your birthday is,” he says. “You don’t know when my birthday is,” I say.

“Do you want a vicodin?”

“No,” I say. I fall asleep.

I’m sitting in the living room with my roommates. I don’t know how I got there. They’re talking and I’m talking. I think it’s Friday night. Maybe it’s not. I don’t think I eat anything. Maybe I do. Crackers? I like crackers. We don’t have any, so maybe I don’t eat anything. We use too much spice in everything we cook. I don’t like spice. I like crackers.

I have to open my eyes periodically, using my hands to pry the lids apart. Someone got gauze, which I use to brush the crust off. I use an ice pack–five minutes on, five minutes off, to reduce swelling, and ingest IB prophen every four hours. I drink water and tang. I go to sleep.

Visionary Week One: Anesthesia

There is something scary about going under. They even use that phrase “going under anesthesia,” like it’s this thing that closes over you, that buries you. Your body is so dead they have to snake a tube down your throat and into your lungs to keep you oxygenated. They monitor your hear rate through sticky foam tabs attached to thin wires slapped on with total irreverence. For the anesthesia team, this is every day. For me, it was a scant, but possibly, opportunity to die.

Being anesthetized wasn’t real to me until they stuck the IV into the back of my hand. It was just for a saline pack. “How big is it?” I asked. I could feel the needle parallel to the skin, moving as my hand moved. They told me the gauge. I marveled. It was smaller than the industrial in my ear, but still large. For a needle.

When I filled out my intake form, they asked that “concerns [me] the most about anesthesia.” I honestly wrote: peeing on the surgeon. When I had surgery as a kid, they told us we had to take our underwear off in case we peed on the operating table. I have TB (tiny bladder), drink a lot of water to stave off dehydration induced migraines, and am a nervous pee-er on top of that. It was a real concern, even though I knew it was a ridiculous one.

Everyone talked to me very candidly about the process as they prepped me for it. They explained each step, and how each chemical would affect my body and my mind. They used scientific and medical terminology. They talked with me about their children and their jobs, how they delt about the weather. The last man they went on a date with. They laughed at my bad jokes and reassured me again and again that I was not actually going under for some sort of medical test. I was not going to wake up strapped to a table while someone performed some experiment on me. There were no aliens, monsters, or secret government agencies.

“I’ve watched a lot of movies and TV shows,” I told them.

The anesthesiologist, the one with the MD, came over to me and asked which eye we were operating on. That had been asked of me before–by people who didn’t know what was going on (who needed to know), and by people who did know what was going on (to make sure I did). “Left or right?” He asked. “Both,” I said. “Oh. Double block?” He asked, holding a sharpie.

“Are you going to write “right” and “left” on my eyes, like they do with limbs so they don’t accidentally operate on the wrong one?”

It became clear that he didn’t know what was happening with me and for a moment I was terrified. One of the nurses, one of the members of my team, came over and explained to him what was going on, and then reassured me he was good.

“There are lots of bays with different patients. The one across from us is getting blocked later.”

After that, I was nervous. I had to pee. They laughed and helped me over to the bathroom as I apologized and tried to explain. I told them that one of my friends said she groped her anesthesiology team (sexually) when she was drugged out. One of my nurses laughed and said I should tell more people that. “Maybe I have the wrong patients,” he said.

Back in the bed, he promised me liquid courage. “I’m here for you,” he said. He injected a syringe into the IV tube and then held my hand and I forgot whatever came after that. I remember lights, comforting words, and moving, in broken up moments without linearity.

Visionary Week One: Communication

On Communication

Dear Friends,

I am going to be wicked bored next week and spend a lot of time cleaning my house and looking at things. If you would like to hang out, go on walks, cook dinner, or just chat for a while, please call me. I won’t be on the internet or my computer very much. I will likely not respond to text messages. Phone calls are the best. Really.

Love,
M.

By the time I got my phone back, post-op, the screen was a blurry, bright mess that was painful to look at. It was also displaying a full list of notifications, informing me that SOMEONE wishes me luck, or that PERSON wants to know how I’m doing. Two days later, I want to listen to podcasts while cleaning the kitchen. I open my computer and notice the e-mails asking me if I want to meet up. I get dozens of instant messages asking how I am going. Different people. The same again and again.

I try to bang out responses “I’m okay. Not really into screening. Call me if you want to hang out.” I see more messages and e-mails each time, from the same people. My phone does not ring.

The takeaway here is that we’re all so damned attached to not talking. That’s cool–I’m adverse to it as well. But man, we really hate talking.