It Feels like Drowning—A Diagnosis Story
Present
When a person almost drowns, they often experience memory loss. I’ve never almost drowned in a literal sense, but the water has become a home. My memory of life before is spotty. Over a year has gone by now. A lot has happened since that day—good things and bad things, all overshadowed by this dark mark. I had nineteen years of liberation. Now I don’t remember what it’s like not having to worry about falling asleep, not having to always make sure my body is okay, not having to constantly check on myself. I don’t remember being carefree.
It’s always in the back of my mind. Everything I do, everywhere I go—all of it is dictated by my diagnosis. I feel like I’m drowning, but I never even knew I was near water. I remember a girl who faced this problem. We were nine years old and on the playground. “I have type 1 diabetes, I don’t think I’m going to live as long as everyone else,” she confided in me. I remember feeling guilty that I didn’t have this worry. When I got home from school, I told my mom what that girl had said. Her response, even though she claims she didn’t say this: “Well, it’s probably true, her body just doesn’t work as well as a healthy person, not like you or me.” Isn’t it funny? I can remember this, but I can’t remember life my diagnosis. I lived almost twenty years without it daunting me, teasing me, pushing me further into the dark depths of the ocean. Taking care of it has become apart of life: eat, sleep, bathroom, shower, check blood glucose, call mom, treat low, work through the high and repeat. I feel my arms and legs give out. I don’t feel like swimming anymore.
I don’t know what it would be like to not have it on my mind all the time. Without today’s technology, I would be dead. I feel my head slip under water. Fighting it is too hard. I already feel like I’m living on borrowed time. It’s strange being a person who wouldn’t have survived a hundred years ago. Kids died on starvation diets. Insulin injections were a thought of the future. Insulin pumps unfathomable. This makes me wonder, should I even be alive? My body decided that one of my vital organs was just going to stop, so why am I able to live when others weren’t?
Breathing under water is impossible, but I feel like I have to try anyway. I am more than a diagnosis and a lousy pancreas. I have found strength I never knew existed. My feet can’t reach the bottom of the water, and my fingers won’t stretch far enough to emerge on top. I’ve learned I am capable of dealing with something that haunts me. I have learned that I will not be limited no matter what is thrown my way. In these revelations, I have found liberation. I find myself fighting, swimming up, even though it would be easier to let myself sink.
One year ago
It’s 9/11. I live in the financial district, and this day is on everyone’s mind. There are signs all over the area pointing to the fountain memorials. The names of the victims are engraved on the grey granite. Water flows to the bottomless pits where the towers once stood. When I watch these beautiful waterfalls, I imagine myself in the soft waves they create. I was 5 when the towers went down so I don’t have much memory of the aftermath, other than not being able to drink tap water for a while and a girl in my class losing her uncle, who was a fire fighter. That’s the weird thing about growing up on Long Island—we know and feel everything that happens in the city because it’s our backyard. I grew up going on field trips to Broadway shows and the amazing Manhattan museums. What happens in New York City carries over to Long Island. The only thing separating us is some water.
I’m in a cab going to the doctor; the driver doesn’t speak any English so I’m alone with my thoughts after several failed conversation attempts. I’m trying not to think about the memorial we are passing and the families grieving loved ones. I’m trying not to think about the appointment I’m going to and what a waste of time it is. This is the first time I’m seeing a doctor without my mom by my side. It’s like the first time you swim without floaties. She thinks I’m being dramatic. I am being dramatic. My roommate Jackie made me the appointment after I’d felt sick for months. The thing is, I think I’m an insomniac with a small bladder and a slightly sore throat. We pass the freedom tower. It reflects the sky, reminds me of water and those waterfall memorials. I saw a documentary on the making of it; they said they wanted it to reflect the sky to show that when we are taken down, we come back, stronger and more beautiful. The old towers weren’t beautiful; they were large, intimidating and intense, but not beautiful. I asked my friend to come to the appointment with me but told her she shouldn’t last minute. It would be humiliating to go and be told nothing was wrong, even more so in front of someone else. As we drive down the West Side Highway, on my left I see the Hudson River, where the water is supposedly toxic.
Am I crazy? Why am I doing this? The truth is I’m showing symptoms of juvenile diabetes. I’m losing weight, which I love, but I know that I’m not doing anything to lose it. I’m tired all the time because I have to go to the bathroom every hour and can’t fall into a deep sleep. But that’s normal too because I’m drinking much more water lately to soothe my throat. My roommate said these things aren’t normal, and I kind of don’t think they are either, which is why I complained in the first place. My other roommate, Elliana, groans every time I bring it up, “Mandy, you are fine! Stop feeding into this Jackie!” I laugh because she’s right. That doesn’t stop me from going to the doctor. I wish water were always shallow. I’m paying close attention to the streets we are passing; 54, 55, 56. Finally we get to 57th Street, “This is good,” I say. “You can drop me off here.” A grunt is the response I get. I give the driver some cash with a bigger tip than necessary and start looking for the building number. My heart is beating fast. I feel anxious as I push past people and enter the revolving door of the tall building. I look around for clues to see if I’m in the right spot. I see the doctor’s name and a floor number next to it so I hop in the elevator and push the button. I’m panicking. I feel like I should leave but it’s too late. I’m here already. How stupid would I look running out now?
I sign in with the girl at the front desk who has a warm smile and makes me feel a little better. She knows as soon as I enter this is my first time filling out forms on my own so she helps me before I even ask for it. I’m glad there is a lifeguard at the beach. I give her my paperwork and take a seat waiting to be called. I’m there for about twenty minutes before the door opens. An eccentric looking man with white hair and pale skin walks out with a family. He’s giving them instructions on doing something and taking some kind of medication. I’m panicking again. I know I’m next. When the family walks out he looks at me, glasses perched on his big nose, thick eyebrows raised slightly, “Jaguden?”
“Yes, that’s me.” He gestures for me to follow him.
There are papers all over his desk. He has a poster of how the thyroid works and what hormones do. I feel out of my element. I’m stuck in an undercurrent, unable to catch my breath.
“So, what brings you here.” He says while sitting down. I take that as my cue to sit down as well.
“My roommate’s mom is a diabetic educator; she’s convinced I’m showing the symptoms of type 1 diabetes.” I remember awkwardly laughing. “It’s probably nothing but I have to make sure.” He starts doing routine tests, puts his hands on my neck to feel my thyroid, and has me open my mouth saying “ah.”
“How long has your tongue been yellow?” He asks. I hadn’t even realized it was yellow.
“I’m not sure.” He hums and keeps going, ending by pricking my finger. “I’m going to test this, I’ll be right back.” When he leaves the room, I take out my phone and turn my camera on myself. My tongue is yellow. I hear the door handle rattle and quickly put my phone on my lap, cheeks red with embarrassment.
He walks in and the look on his face makes me want to cry. His lips are pressed together tightly. He’s holding papers in his hand. I can’t help but stare at the pores on his nose, large and dark. I want to put my hands over my ears. I know what he’s going to say. “Well, it looks like your roommate is right. Don’t worry, though; we have come so far in developments to make this disease more manageable. You will be fine. You can still have children one day. We’ll get your prescriptions through, maybe you want to text your family or someone.”
All I can think about is that this man thinks I’m thinking about having a baby. I’m 19. I’m now the owner of a non-working pancreas, and his first assurance is that I’m capable of becoming a biological mother, which makes me think of the pools of water at the memorial, the endless depths of water. I wrote a very eloquent and assuring text to my mom,
“It’s type 1.”
“What??”
The phone rings. I tell the doctor it’s my mom. I want to speak, but if I say something I know I’m going to cry. He talks to my mom for a while then sends me to get blood work next door. Everything blurs together. I can’t eat. I don’t know what it will do to my body. I don’t understand how anything works. After getting blood drawn I get in a cab. In the cab I realize I didn’t even check out. I probably owe money or something. My mom is calling again so I answer, but I can’t say much. She tells me she’s coming into the city with my dad. I pass the memorials again. I cry with the mothers who lost their babies. I cry with the grieving wives and husbands. I cry with the children whose parents went to work and never came home. I mourn my own loss, and I feel selfish; my fate isn’t half as bad as these people’s, yet I’m sitting here feeling bad for myself. I guess one could say I drowned in the memorials, in my sorrows, in my misery; but I’m stronger than that. I know I can’t let myself be defeated so easily. I need to hold my head high. I need to keep swimming and never stop.
Present
The hardest thing to do sometimes is to let myself win. Winning involves a lot of effort to keep moving forward. It takes strength and stamina. When the tide is trying to defeat me, I have to fight it, keep pushing and pushing. Sometimes it gets me down, and sometimes I need to rest under the water for a bit. But when my feet touch the bottom of the ocean, I push up and my head emerges on top.
I have all the luck in the world and no luck at all. Currently, I am studying abroad in London. Being stuck under the waves in London is a little harder than in my home city. I have friends here, but I don’t have loved ones, so there is little to no support system. My friends here ask all the right questions, but never knew me BD (before diagnosis). They want to know what to do in case of emergency but don’t seem to understand that I need to monitor myself 24/7. I feel like I’m alone in the deep end of the pool while they are all in the safe confines of the shallow end. I miss home.
London is a spectacular city. I’m in a bar near my student accommodations. It’s a place called Old Street Records. Old records and rock n’ roll newspaper clippings of the Stones and the Beatles decorate the place. My friends and I are sipping on rum and Diet Cokes, laughing, our cheeks tinged pink, our hips bumping with the song being covered by the live band. A man with a broad chin and green eyes keeps buying me drinks. I’m going home in a few days. I am going to miss moments like this the most. I’m going to miss the Thames and the West End, but there is nothing that compares to being so immersed in the nightlife of London culture that for once I don’t feel like I’m going to drown.
I’m not even in the water anymore. I’m tucked in a towel, my toes wiggling in the warm sand, my skin sun-reddened, drops of water falling on my back from my wet hair. My friend Bridget grabs my hand and twirls me around. My drink spills a little, but I don’t even care. The man who keeps buying me drinks approaches me and asks if I would dance with him. He says my American accent is attractive. It’s relaxed—he says it sounds like a Californian surfer. I tell him I have never surfed in my life but I do enjoy the water. He kisses me and I bring him back to my room. We stay up talking for hours, and when he leaves I know I will never see him again.
I realize something that night; I love the water. We have had our ups and downs, but the water has made me better. It gave me the ultimatum, drown or survive and I chose to survive. I throw on a big t-shirt. It’s a trendy shirt I got at a boutique in Manhattan. On the shirt there’s a skeleton of a mermaid with a clock behind it. I don’t completely understand the shirt, but I like to think the mermaid would be me if I stopped fighting. Or maybe it’s supposed to mean that time runs out for everyone and everything. Either way, I’m not stopping the clock early, and I’m not becoming that skeleton under water.
A few days later I get home to New York. A year has passed since my diagnosis, and my mom tells me about a boy who just received the same news. I realize I have found my purpose in the water. I can help others accept the water as their friend, show them they don’t have to feel alone in the tide. I was never actually alone in the water. I just couldn’t see who was around me. I promise myself I will never drown.
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