I remember you.

I remember you were embarrassed but you let me help you anyway. You joked that you could be my mother and I joked that I could just pick you up and take you to the bathroom myself but you wouldn’t let me you wanted to do it on your own you said you could do it you said. Every day you were weaker and you were disappearing into the bed around you but your spirit never did and you smiled so much I remember that. I helped you make the text bigger and you always remembered that somehow and you wrote it in that note you gave me that I still have hanging in my bedroom and I think about you all the time. You said you could do it and I was right behind you, watching your legs flail under you and your white knuckles on those bars and you scared me half to death but I was always right there and we always made it so when your legs crumpled you fell in my arms we both laid on the cold tile and you said it’s okay I’m okay and you laughed and cried and I heard his cold voice in class say the disease that riddled your bones and I thought of you and you’re always right there.

And then you, I can’t forget you even though I knew nothing about you except you were from Montana. I remember that because they said that’s where your children where and that’s why they weren’t there with you. I knew things about what had happened to you about how someone came into your house with a baseball bat and that’s why they found you in your kitchen with your head caved in like that and they brought you here and found a fungus growing in your brain and I didn’t even know that was possible but I didn’t know anything about you. They unplugged you and left you and no one ever came for you, your children never came but your breath held on and all the nurses kept waiting for you for the room for the next patient to swing through but they never came and you kept waiting, waiting, waiting and I was nervous to be alone with you because I didn’t know what to say god please help me so I washed your skin and moisturized the cracks in your lips and tried not to look at your skull caved in like that. You had a tattoo when I felt your pulse I remember that and I don’t know what it was or what it meant but you had a childhood and stories so many stories and I know you heard me because your eyelashes moved, can you hear me, everyone is here your children are here and telling you they love you they love you so much we are all here we’re here. I left you and you stopped waiting because when the nurse went in you were gone and they rolled you to the basement but no one ever came for you.

But for the life of me, I can’t remember what brought you. I remember your mother telling me you were an angel and how you would spend your weekends pulling weeds, helping people move, being a friend for the kids who didn’t have any but I can’t remember what shattered your skull like that. They said the clear fluid dripping from your nose was fluid from your brain and they didn’t know what to do with you because your skull was like pieces of an eggshell and they couldn’t piece it back together, can’t you see. And even though I looked away the way her voice sounded I knew her heart was breaking and the hallways echoed she can’t lose you, she won’t lose you, DO SOMETHING doctor, but we can’t fix you we can’t fix you. So they left and she stood there and she looked at me but this time I couldn’t look away, yes I’ll stay with you yes I’ll pray with you and she whispered to me in the dark as we cried and in the morning I left and so did you but when I got home I still smelled like you and the water was so hot but I couldn’t get rid of you they never came for you I knew nothing about you we’re all here for you I can’t lose you we can’t fix you so the water dripped, dripped, dripped.

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Read This When,


You think life is hard.

Penny danced along the edge of life for the first few months of her life, her diagnosis remained a mystery until he pieced all of her puzzling pieces together. “She can’t get sugar into her blood,” her mother was told finally. “You’re going to have to do it for her.” This angel wore deep, dark circles in her sallow skin, but her daughter Penny was radiant and beautiful – impeccably dressed and smiling at all the stiff white coats before her. “People tell me, ‘She looks so healthy!’. But they don’t understand.”

She told us how Penny doesn’t know how to chew because she gets fed through a tube, and how she vomits – a lot. She told us how every single night for the past 4 years, she had to set 5-7 alarms so she could wake up and stumble into her daughter’s room and pump corn starch into the tube in her belly while Penny slept. She told us how she had to keep hiding her alarm clock throughout the night, because her exhaustion wouldn’t let her wake up. She could not afford to hit snooze, like so many of us do. Her daughter’s life depended on her. They finally scrounged up enough money to buy an IV pump for Penny while she slept – until the night God awoke her to find Penny’s pump had become clogged. Her daughter’s life was too precious. The alarms continued.

They were told the odds of their second child having the same disease was very small, but when their son was born, he beat the odds. Her strength crumbled and her shoulders shook as she cried. “I never knew I could love something as much as I love them. I would do absolutely anything for them. I have given up everything for them – my dream job I had worked for so many years to get, my life, my sleep, my sanity,” She choked a laugh and looked at her two little ones, smiling cheeks glistening. There was a long silence before she looked back at us and said, “But you know what’s funny? That physician who saved Penny’s life and finally solved the puzzle for us that night in the Emergency Department, I didn’t even learn his name. He was only in our lives for the blink of an eye before he sent us off to her specialist. I think of him sometimes, like when I’m in the middle of the grocery store covered in Penny’s spontaneous vomit, and I think to myself, ‘He has no idea what happened after he handed us that diagnosis’. He has no idea how my life got flipped upside down after he said those 3 short words – Von Gierke’s Disease.'”

You think you know something. 

Lupus is an enigma that insidiously sneaks past it’s diagnosis until a keen physician comes along. For Rose, that took 15 long years. “I feel like those years it took to get diagnosed with lupus – feeling constant pain and crippling fatigue and getting treated like I was crazy – those years were robbed from me.” Her symptoms appeared slowly, as most with her disease do, and were shrugged off or ignored by herself and physicians. When she became so fatigued she couldn’t get out of bed and her joints were too swollen to move, she finally started aggressively searching for answers. “I felt like no one was really listening to me. I even remember being diagnosed with a mood disorder at one point, can you believe that?” Her eyes moved from our faces to the floor, and the reel I’ve seen played one thousand times since starting medical school followed: her gaze returned to us as she said, “If you remember nothing at all about me or lupus or how to test for it, just remember this: Challenge your assumptions.”

You’re facing the impossible. 

I noticed his hands trembling while he shuffled his papers that were packed with tiny scribbles. He had beads of sweat collecting at his perfectly groomed hairline. He had worn his finest tweed suit and he used a cane – just like the SketchyMicro videos used to symbolize his disease. “This is my first time speaking in public, and the first time I have told anyone about my condition. I’m very nervous, please forgive me,” he said to us, avoiding eye contact. He took a deep breath and began.

“This sentence is the hardest I have ever written. But just like that, I have done it, and although it wasn’t the best it could have been – as is life.” The most beautiful words began flowing from his mouth as he read his notes, each sentence becoming less shaky than the last. He congratulated us on our progress thus far in medical school, he asked us to keep an open mind as he shared his story, and to forgive his lack of medical literacy. “I get my hands on any medical things I can,” he told us, eyes sparkling as he scanned the room for the first time. “I envy you.”

It had taken him eight years to share his story with anyone – with us. He lived in seclusion, without a single friendship or relationship, too ashamed of his diagnosis and  disowned from his family after they found out. “Don’t think I haven’t tried, though,” he offered. “I would have it all planned – clothes ironed and laid out, shoes polished, teeth brushed. I would get all ready and dressed, walk to the door, stand there for fifteen minutes trying to get myself to grab the handle, and then turn around, get undressed, and go to bed. This went on for years.” He began needing an oxygen tank at work, and when people would ask him about it he would simply reply, “lung problems”. “I never knew what it truly felt like to be alone before this,” he told us. He spoke about how everyone makes mistakes when they’re younger – hundreds of them. Petty theft from a gas station, experimentation with drugs or alcohol, reckless decisions that make you wonder how you ever made it out of those years alive. “But you can never press the reset button. Not even once.”

He told us that he was reminded of his mistake every day – from the moment he opened his eyes until his head hit the pillow again. His life had morphed into a living countdown timer, ruled by a virus that was ripping out his immune system one day at a time. “You don’t know what you’re made of until you’re up against it.”

After finishing his last page of notes, he stood back and looked up at the hundred fledgling doctors sitting before him. Then he said, “Oh! I almost forgot!” and he reached in his pocket and pulled out a small sheet of paper. He carefully unfolded it, cleared his throat and said, “First they ignore you, then they laugh at you, then they fight you, then you win. Ghandi.”

 

 

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