The Stay

Posted on | December 4, 2016 | No Comments

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After a month of sickness and soul-deep darkness that I couldn’t fight, all my body wanted to do was sleep. More and more, as I gave in to not eating or drinking. My body heated and sweat and cooled off, symptoms wracked through and my mind left me homeless on a street in a far away corner of some other universe. I could feel my body get tired, and I started to wonder if I was dying. But in the moment, I didn’t really care. And that thought scared me enough to wake, then go back to sleep again.

After three days of sleeping day and night on the loveseat in my friend’s home on Long Island, I woke to my heart pounding out of my chest. I hadn’t gone to the bathroom in a day and a half, I was dizzy and the acid burned up my throat. Nicholas was working in Brooklyn, and I didn’t know what to do – but something was wrong. Really wrong, and I was going to die in that chair if I didn’t get up for myself and get help. My roommate came home from work, and I cried as I asked her for help. I had no health insurance, but it didn’t matter anymore. My life mattered more than insurance. Walking to her car and into the doctor’s office felt like a Herculean effort. I was coming out of my skin and couldn’t do anything about it. It felt like I was dying. The doctor took one look at me, and told me to go to the emergency room. I wanted to curl up on the floor and not move, I couldn’t imagine the energy to go back outside and to another location. But she helped me.

And sat in a smelly, loud, scary emergency room waiting room for two hours. She called Nicholas, and when he arrived she left me to his care. When they finally called me in, I was tachycardic and severely dehydrated, with debilitating abdominal pain. There were patients being treated in hallways, outdated equipment and stained ceiling tiles frightened me; I felt like a small rabbit caught in a snare, a child trapped in a nightmare. I couldn’t bear anything. Much of what happened next is blurry, and to be honest – I don’t want to remember every detail. What I do know is this…

They hooked me to an IV, monitored my vitals and pain, and Nicholas sat with me all through that endless night. Close to dawn, they admitted me for a longer stay. I ended up being there for five long days, and even longer nights. During which I was tested for every digestive malady under the sun, and which I actually prayed to know because an ANSWER of what was WRONG with me would finally provide a direction to go in. The not knowing was unbearable. The hardest parts of that experience were as follows…

Since it was a teaching hospital, there was never the same doctor or doctor-in-training who would come see me twice. Over thirteen different doctor’s treated me that week, often with a group of interns crowded into the room. Blood was drawn twice a day, tests were sent out, and no one would come to give us answers. When my mother came that second day, she tracked down anyone who could give them. They tested my blood, my urine, my plasma, my stool. All tests came back negative: for Crohns disease, Celiac, IBS, ulcers, illnesses which I can’t pronounce and can’t remember, a terrifying endoscopy where I was put under for the first time in my life but which yielded no cancers or other obvious malady. Endless it seemed. The ironic thing was, every time a test came back negative – I was disappointed. Because it meant there still wasn’t an answer.

My roommate was an older woman who spoke no English, and couldn’t control her bowels…and the nursing staff was so busy and overworked she went long periods without being tended to. So the room smelled like a pigsty, the bathroom smeared in shit and uncleaned, so I stepped hopscotch style between piles, barefoot with my IV stand in tow as infrequently as possible. Showering was out of the question. Nurses in training poked and prodded, and I only screamed to stop once when one of them failed three times to take arterial blood. The bruise on my wrist took up half my forearm and lasted two weeks. I was covered in them; I didn’t know who I was anymore.

The only thing that kept me tethered was the presence of my mother, and Nicholas. The first two nights, I sent my mother to my roommates home, but Nicholas…he stayed with me. The second night, he spent in the hospital bed next to me. I don’t know what I would have done without him. I was in an arena of nightmares, both internal and external, and he was the only safe thing in all the universe.

I felt separate from myself, other. Like a foreign alien inhabiting this mess of flesh and bone. I’d examine my skinny wrists and the needles and tubes and wonder where I had gone. Frightening does not convey how that actually felt. I had lost myself.

The third day, both Nicholas and my mother were out getting food, and I could feel my heartbeat ratchet up, and panic choke my throat. I pressed the button for the nurse, but not once had that ever yielded one coming to check on me. The alarms rang from down the hall, a code blue of someone coding. Someone dying. Feet ran past and shouting began. The terror rose up, seized me around the throat and I could not even scream. The room whirled and I looked for a bucket to throw up in. If someone had handed me a gun, I’m not sure I wouldn’t have used it to release myself from the torture. A paralytic electric current had passed over my skin, and I shook and moaned from the force and freeze of it.

My mother walked in, took one look at me and ran back out, yelling for help. Eventually, someone came, and once more – my symptoms yielded no obvious life threatening situation, and I wanted to scream in frustration. And then she said, “Are you having a panic attack?”

Something in her words resonated, and I instinctively knew that yes! That is what this is! almost immediately. Comprehension also dawned on the face of my mother, and some sort of relief helped calm me down some. I thought…THIS is what a panic attack feels like? It feels like DYING! That’s ALL this is?! This feels WORSE than dying!!!

I felt relieved and ashamed, humiliated at the extremity of my reaction and my inability to control it. But to know…something! SOME part of this THING that had taken over me, was strong. The nurse gave me my first Xanax, and I felt the calm spread slowly, blessedly through my blood. Her order was that I could be given two pills a day for the next two days. No more. It made me feel like a crack addict; punished for something I couldn’t control. I felt…inhuman.

Nicholas held my hand as my mother ran out of patience. She demanded a new room, and she got one for me. I was moved to a quieter, better smelling room. My new roommate was an elderly woman who fought for every breath, and was never conscious. But it was better than where I’d been. And at some point, a new doctor came in and told us that only concrete thing they could find to be an issue was something called Gastritis. Basically, just inflammation of the stomach lining. It’s temporary. It should never last more than a couple weeks. It causes nausea, acid reflux and heartburn.

That’s it. It was an answer, but I knew that was not the only thing wrong with me. But, I was also grateful it wasn’t more serious…despite the shame I felt around how extreme it felt in my own body and the confusion around how the diagnosis didn’t match up to how awful I felt. They gave me Prilosec and my 2-a-day-Xanax, and told me that once I was hydrated sufficiently and increased my calories to 500 a day, I’d be released. No more doctor’s came, but maybe they didn’t need to.

The beauty in this experience was the following…

When my Mother arrived that second day, she curled up in the bed with me and I buried my head in her chest. It’s been 30 years since I needed my mother like this, in this way. And the first time I’ve felt that need since then too. She fought for me the entire way; for care, a cleaner room, medication, food that I would try to eat, answers. She demanded for me when I could not show up for myself. When she left that night, she unclasped a bracelet from her wrist and put it on mine. “This will keep you brave,” she told me fiercely. I clung to it all through the dark nights to come, touching the smooth gold links and imagined breathing in her scent and strength. She brought me flowers and let sunshine into the room. She sat and read me the entire book of, “Gift From the Sea” by Anne Morrow Lindbergh. I closed my eyes and listened to her voice, the cadence and lilt and upstate New York accent that brought me memories of every single night of my childhood and all the books she’s read to me over the years. The sound of turning pages, the smell of the paper, the pictures and sounds the story told through her voice. She brought me my noise-canceling headphones so I could escape the sounds of the hospital each night, and promised to be there in the morning. I couldn’t have done this without her. She has always shown up for me. Always.

From the first day, Nicholas was by my side. He was quiet and steady, just offering his presence even though he didn’t know what to do or how best to help. Men love to know what to DO, and he didn’t let that make him frantic – he just stayed with me, letting me know how much he loved me. He never left. I could offer him nothing, nothing, and yet he stayed. I cried myself to sleep thinking about that; about all the years I thought I had to prove my worth, prove that I was lovable. He took my fear of abandonment and speared it straight through the heart. Even though I couldn’t feel it much, looking back, it was one of the greatest offerings of love I have ever been given. To be loved in such a state, is to be loved wholly. And now, I could not deny that I had been given that gift.

The other miracle that happened is that the hospital’s Medicaid rep came and offered assistance for me. She ended up doing all the paperwork and submitting everything needed, and was able to procure approval for me. The hospital stay would be covered in its entirety. 100%. I broke down and cried. The bill was over $40,000. I have never been so grateful for federal and state-funded programs as I was in that moment. And I was humbled even more to learn first hand how that can save a life, and save me from destitution and financial ruin. I will always be thankful…

At the end of day 5, I was released. My mother and Nicholas wheeled me out to the car, and I breathed in the cold, bright blue end of October air. I was weak and frightened, and far from recovered. But I had people who loved me, and I knew more than I did a week before. Sometimes, we are only given the next five minutes, the next 50 yards, only one small answer at a time. And yet we’re still required to move forward. To live.

I am not okay. I don’t know what’s all wrong with me. But I’m not giving up yet. There’s still too much to live for. And the answer was clear: Go home to them. Let yourself be cared for. Let yourself be loved. 

Yes. Yes…

[A few days after this, I packed up my car and drove up to Boston to my parents house, where I would spend the next six months convalescing and recovering. The truth of all that happened is still being uncovered, even three years later. But it does include some severe PTSD and triggered experiences from my past that came to the surface alongside the physical symptoms.] 

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