Butterflies have a short lifespan. Depending on the size, species and geographical area, the average butterfly may only live for a month (Learn about Nature). Butterflies are often described as beautiful, delicate insects; they immediately capture our attention with the intricate details of their wings. Butterflies remind us not to take life so seriously: to let go of our past, value our most meaningful experiences, awaken our minds to the littlest details, and embrace transformation. Because of their short life expectancy, they are symbolic for freedom and the desire to live a purposeful life; they teach us to focus on the present moment by living every day like a butterfly.
This lesson has always sat at the back of my mind, but it wasn’t until I heard about Claire Wineland that the sincerity of the message became clear. At birth, Claire was diagnosed with Cystic Fibrosis (CF), a disease caused by a mutation in the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) gene that controls the flow of salt and fluids throughout the body (Cystic Fibrosis Foundation). When the CFTR gene malfunctions or is not made at all, it causes a thick mucus to form in the lungs (Cystic Fibrosis Foundation). Any bacteria that would normally be cleared from a healthy set of lungs resides in the thick mucus of a CF patient. This leads to infections, respiratory failure and prevents the digestive system from breaking down foods and absorbing nutrients (Cystic Fibrosis Foundation). Infections are easily obtained and weaken the immune system; the buildup of mucus not only impacts the lungs and pancreas, but it can block the bile duct causing liver disease (Cystic Fibrosis Foundation). For these reasons, patients must be cautious of their surroundings because they have a high risk of breathing in bacteria particles that inhabit the environment.
CF is a recessive gene and can only be inherited when both copies are received from each parent and passed along to the child (Cystic Fibrosis Foundation). There are approximately 1000 people diagnosed with CF in the United States every year and more than 70,000 people living with the disease worldwide (Cystic Fibrosis Foundation). Unfortunately, there is no cure; however, there are multiple widely used treatments that help sustain the lives of those affected. Most individuals with CF will wear an “inflatable vest that vibrates the chest at a high frequency to help loosen and thin mucus” (Cystic Fibrosis Foundation). Patients also have the choice of inhaling a liquid medicine to help clear the airway (Cystic Fibrosis Foundation). Furthermore, by taking a pancreatic enzyme supplement with every meal, CF patients are able to maintain a healthy weight which helps to improve the absorption of nutrients (Cystic Fibrosis Foundation).
In the summer of 2018 when a short documentary titled, “Meet Claire, Finding Beauty in the Sadness | My Last Days” was released on YouTube, I was very touched by Claire’s story. At the time, I didn’t realize how much Claire’s positive outlook on life would impact my own way of viewing the world. She showed strength and an immense desire to fight for her life. By the age of 13 she had already survived a 1% chance of living after being put on an oscillator for 17 days, endured numerous surgeries, founded Claire’s Place Foundation and started her own YouTube channel to connect with others by sharing her story. This inspired me to reflect on the idea of happiness as a choice: knowing that tomorrow is never promised and that every day we can choose to express happiness and an appreciation for our opportunities.
Every moment was a milestone which enveloped her entire perspective of life in gratitude. Claire often reminded friends, family and people from across the world (including me) that death is inevitable, but life itself is an opportunity; it’s something we can be proud of because we decide how we react. In the documentary, she mentioned a specific moment shared with her father, John, as they sat in the hospital singing, eating Indian cuisine and watching the sunset. She explained that everything was wonderful, but not in spite of the fact that she was in a hospital room: everything was wonderful and she was in a hospital room. She taught me that regardless of one’s circumstance, life is beautiful everywhere and it’s up to each of us to make the decision to view the world in this light.
Growing up, Claire dreamed of becoming a motivational speaker in the hopes of making an impact on the world. She eventually spoke at the Life is Beautiful Festival in Las Vegas, Nevada and went on to speak in places like Philadelphia and Indianapolis. As her health declined near the middle of 2018, she was told she could no longer fly and was given a life expectancy of a year. Claire was in end-stage lung disease and had two options: take a risk by undergoing the complicated procedure of a double lung transplant or embrace the estimated 12 months of life she was given. After making the life-altering decision to be put on the transplant list, she battled maintaining her weight and the idea of life post-transplant. In another video “new lungs new me (not really)”, she shared that a pair of new lungs did not represent her being “fixed” or how she could finally do everything she wanted to do, but that she could continue living her life and being happy. Near the end of the video, she reinforced a vital message that throughout life there is always going to be an innate pain or an obstacle to overcome, but keeping a positive mindset allows us to endure hardships.
Finally, on August 26, 2018, Claire underwent a double lung transplant procedure. Although the surgery went well, she suffered from a stroke which cut off blood flow to the right side of her brain. Within a week of the surgery, her parents decided to take her off life support. On September 2, 2018, the resilient 21-year-old passed away and donated her organs giving others the chance to live and continue their fight in becoming physically and mentally stronger. A celebration of life was held on September 16, 2018 where hundreds of friends and family gathered to share stories and release tiny butterflies in honour of her.
Even though I did not have the pleasure of meeting Claire, I am grateful to have been influenced by her wisdom and the force of gratitude she spread so freely. I think there is something special about the ability to connect with others, especially when you don’t know them personally. I find beauty knowing that among nearly 8 billion people, each with individual experiences, it’s our feelings towards these experiences bringing us together. Claire decided to share her story with the world and doing so, she made a long-lasting impact on my life. Her honesty, vulnerability and attitude towards her circumstance allowed for intimate connections, despite the distance and divide between our paths. Overall, the memory of Claire continues to thrive within every heart she had the pleasure to touch as her presence breathes in the form of a beautiful butterfly.
To Claire, thank you for teaching me that every day is as beautiful as we choose to envision and that we have the power to make a life we are proud of. Without you, I would have never learned the importance of admiring the true intricacy, grace and strength of a butterfly prior to imagining whether they would fly tomorrow.
Works Cited
Claire Wineland; Photograph by Larissa Peroux. https://clairesplacefoundation.org/2018/09/our-founder-claire-wineland-dies-one-week-after-lung-transplant/
Cystic Fibrosis Foundation. Cystic Fibrosis Foundation. 2018. 21 November 2018.
Learn About Nature. How Long Do Butterflies Live? – The Butterfly Site. 2018. 22 November, 2018.
“Meet Claire, Finding Beauty in the Sadness | My Last Days.” YouTube, uploaded by SoulPancake, 4 May, 2018, https://youtu.be/kD_Fr3VAsYM .
“my life expectancy.” YouTube, uploaded by Claire Wineland, 23 May, 2018, https://youtu.be/fERuEamIEb8 .
“new lungs new me (not really).” YouTube, uploaded by Claire Wineland, 10 June, 2018, https://youtu.be/2GH0fU3IjZk .
“Thank you.” YouTube, uploaded by Claire Wineland, 12 August, 2018, https://youtu.be/UaDUKcXgp5c .
Life in Colour 
Claire changed my whole perspective to life. She was an angel, still is.
LikeLiked by 1 person