Emily Muller is the 2017 Andre Sobel Award 3rd Place Winner.
It may seem like it now, but this is not the end of your world. Start this experience by hanging a poster of your favorite band beside your bed. When infusions make your bones ache and you’re tempted to give it all up remember in a few months that musician you love may come out with a new album and you want to be alive to hear it. Go to more concerts on school nights, scream until you can barely breathe, and if a few days before a gig you have tickets for you find that you’re too ill to stand try contacting the tour manager about your situation…they may just let you sit stage side.
Have your mind when you don’t have your body. When all else seems lost, rely on your intellect. Let Hall guide you through your “pain vomit neuropathy morphine nightmare.” Prove Kerouac’s suspicion that man can “not only live in others but give them life.” Proudly quote “it has been a beautiful fight, still is,” even in situations where it’s out of context. I don’t think Bukowski would mind.
Remember that mental health is important. Call a counselor if you need one. Don’t hold yourself to tropes and cliches that others have made for you. You don’t have to be the “inspirational sick kid.” Redefine what it means to be strong, and find meaning in being candid with your experiences. If it makes others uncomfortable, oh well. You are not here for their comfort. You are here to speak and live your truth.
While in treatment you may meet people that are in their final days. I know it’s hard to lose the only friends that seem to fully understand, but take it upon yourself to remember them. It is a cherished and beautiful responsibility to have. Always know that they didn’t “lose” their battle.
War terminology can never capture an entire life story.
Others may let silly little details about your friend slip in favor of focusing on their “courage” or “bravery.” Know that they were incredibly courageous and brave, but remember their crooked tooth or how much they loved cult classic films, too. If you keep those memories, even in death it will feel as if you have your own little secrets. I think the most important piece of advice I can give you is to allow yourself to feel you age.
Make up games when you’re in clinic. Write songs that consist entirely of ridiculous lyrics and aggressive strums of the C chord. Smear lipstick on your skin and dance around your living room when your parents aren’t home. Do things that you’ll never tell your doctors about. Go see R rated movies just for the sake of rebelling. Borrow a telescope at midnight to stargaze with friends. Scream swear words at empty walls on days where all seems lost. Take bets for bubblegum with the interns when you’re admitted, cry only to soundtracks from dramatic films, and decide that life would be worth the pain of a thousand needle sticks and clinic visits.
Please remember that you do not have to halt your life when you are in danger of losing it. There are so many experiences yet to have.
Love and light,