Personal Essays on Living with Life-Threatening Disease

There is no one answer to the question of what it is like to live with a life-threatening disease. Every person living with a serious illness experiences different challenges and has different ways of coping. Some people experience long stretches of remission, only to be hit with a relapse or another illness that requires treatment. Others live with the knowledge that their disease could come back at any time, no matter how healthy they are.

There are no easy answers, but I hope this series of real stories can offer readers a glimpse into the lives of those affected by a serious illness. These stories of courage, hope, and determination, told by people who are living them can help them understand what it is like to live with a life-threatening or serious illness.

Life and Chocolate

My favorite movie of all time is Forrest Gump. It brings me back to those “baby boomer” years of High School and College of the ’60s and ’70s. Tom Hank’s iconic role in this drama captures life’s trials and triumphs during the years of the Vietnam War and the Civil Rights movement. 

I enjoyed watching this movie over a dozen times. Each time the pithy sayings that resonate from Forrest’s experience deeply impacts my understanding of life. Remember when Forrest’s mom told him, “Life is like a box of chocolates; you don’t always get what you want!”

Five years ago, I reached into that box of chocolates hoping for caramel or peppermint filling. The taste that emerged instead was Parkinson’s disease. Forrest had a word for that, too, “S*** happens.!” And I had to deal with tremors, fatigue, and a loss of coordination every day because of this unwanted neurodegenerative disease. It’s a chocolate gift that seems to keep on giving with no cure on the horizon.

I’ve gone back to Forrest’s life for some answers. Remember his experience in the Vietnam War when his platoon was attacked? What did he do with this piece of chocolate filled with hell? He acted, not by running away, burying his head in the sand, or quitting. Forrest faced the battle and fought back, not resting until every man was brought out. No whining, no giving up, just focused intentionality with bullets flying everywhere. His attitude and actions saved people even though the risk, pain, and suffering were real.

I have to decide every day if I want to follow Forrest’s example of focus, passion, and determination. Will I fight back in the battle or give in and quit? I’m learning that this chocolate-covered surprise doesn’t define me or have power over me as long as I take the right medicine, work out, and have the support of my family and friends. Pain, suffering, bad days, and periodic defeats are sometimes very real but they are faced with a passion to keep fighting, hoping, and helping others.

Thanks, Forrest, for helping me fight back. I think you can too. Enjoy the chocolate.

~ Dave Jones 2/03/2023

Challenges of Change

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The following is a piece that I wrote reflecting on the challenges that the disruption of an illness (or injury, in my case) can bring to our lives. My life in medical school started feeling like a carousel until I fractured my knee skiing and could not participate in many of my usual activities and commitments. However, as I learned, if we can find the silver lining during negative experiences, that might help us to live fuller, happier lives. 

Sometimes it feels like growing up is learning how to become accustomed to the ever-revolving carousel of adulthood and responsibility. Each new day seems to bring its own list of to-dos while we squeeze in time for hobbies and our loved ones, yet still trying to catch up from yesterday. We continue to ride this carousel, entranced by the rhythm of routine and the comfort of what we have already seen. But what happens when the carousel gets disrupted? Maybe due to an illness or injury, we are forced to get off and venture into the unknown. No routine, no path to follow, and no certainty of what’s to come. With the help of our family, friends, and doctors, we have to endure the discomfort of change. Change will be hard, and the journey unforgiving. However, along the way, we might be forced to do those things that we longed to do but were too far out of our revolving comfort zone to make happen. Maybe it’s learning to say no or forgive yourself when you must break a commitment. Maybe it’s taking extra time for yourself to heal – and not feel guilty for doing it. Among all of this change, we might learn that there is more to life than just a carousel. We might even learn there is time to get off for a little while to stop and smell the roses. We don’t choose to have terrible things happen to us, but sometimes those terrible things might force us to learn lessons that can change our lives forever.

Written by Casey McAndrews: Second-year medical student at the University of New England College of Osteopathic Medicine 

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