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.”