“I started realizing that people who are sick, and nurses and doctors as well, everyone in the medical community, everyone in the healthcare community, had been so stuck in this notion that a hospital room is this cold, sterile, white place where we go to be sick. And that that’s all that it can be. And we get so stuck in that that we cannot see the possibility; we can’t see what we can make out of it; we don’t see what we can do with it. And I started realizing that our lives- in a way- are like this. Right. Our lives are like empty hospital rooms. We get so stuck in the idea that: Oh it’s supposed to be good or bad. Oh if we’re sick you, well, you know then, then its, then it’s cold and it’s sterile. And we just have to live with it like that. We don’t let ourself realize, we don’t let ourself see we can make that hospital room beautiful. We can make our lives into a piece of art. We all have that ability, we all have that capability as human beings to turn these empty hospital rooms (to turn these lives!) into something really beautiful.” -Claire Wineland
I have been fortunate enough to live in a place and era where I have not been regularly affected by death. However, these past few months I have had to face the death of my grandmother, the terminal diagnosis of another family member, and- for the first time- the death of a celebrity I admired, Claire Wineland.
I cannot effectively describe the light of Claire’s personality solely through this essay, so I encourage you to watch this documentary[i] on her, as well as peruse her speeches,[ii] interviews,[iii] and YouTube account.[iv] The experienced insight she discloses through her spoken words will likely impact your life significantly more than this article will. However, in memory of her life, I want to bring mention to her willingness to embrace adversity and her gumption to question society; cultivated traits that allowed her- even in her moldable youth- to view her circumstances with a perspective that differed from what society dictated to her.
The ultimate goal Claire set for herself was to alter how sick people are treated and viewed in society, and she did this with the vigor of one in peak health. Instead of waiting for the day she would be healthy, as that was an unlikely possibility for someone in her condition, she decided to live a productive, active life despite her ailments. She had races down hospital corridors, she painted and decorated her hospital rooms so that they felt homey, she made friends with the hospital staff and other patients, she snuck out of the hospital to meet Bernie Sanders, she wrote and sang songs with an ethereal voice,[v] she started a foundation, she traveled, she became a public speaker, she loved, she impassioned others, and she lived without the restriction that so many of us place on ourselves: she didn’t let the challenging aspects of her circumstances define her. Instead, she used the wisdom and strength that these challenges gave her to better both her life and the life of others, teaching us not to pity our dire misfortunes, but to embrace them.
Watching a powerful individual like Claire, someone who had been ill since childhood but who had more energy, grit, and power than many of the healthiest, fittest, nourished, relaxed, and well-rested of us in our prime, is an inspirational experience.[vi] In society, we tend to think of weak or sickly individuals as less happy due to the increased difficulties that they face in life. In a similar manner, we peg those with excessive beauty, wealth, powerful characteristics,[vii] or fame as happier than the average individual due to their superficial advantages. And it is people like Claire- who embrace their ‘misfortune’ with vitality and empowerment- that allow us to understand that it is not our circumstances that dictate whether we live a positive life but rather the knowledge, experience, and insight we garner in embracing our pain, failures, and unfortunate circumstances.
Yet what I personally find the most inspiring about Claire is not the enlightened way she approached life. It is the manner in which she showed- and still shows- us that our perception of our circumstances is contingent upon our perspective. That it is not so much the years or length of our life, but what we do with it that creates a valuable existence. Time seems to be a liner construct- and perhaps it is- and its seems that the more time we have the more fortunate we are- and perhaps so- but when we sit down and contemplate the past, the future, and our present relationship to time, we see that it is not that simple. Time blends, molds, distorts, and ensconces so much of our history. At least in our perceiving minds- which is what life and reality is on an individual basis- time is not so comfortably concrete as many of us in the modern age would like to believe. And if we can view time in a malleable way and work with the unfortunate circumstances that will inevitably befall us, we can learn to appreciate what we are given and use our unique life experiences to incite positive change in the world. Because, as Claire so rightly said, life is more than being happy or successful. It’s more than your emotional state. It’s about what you make out of your happiness, loneliness and despair:
“[Life is] not about emotions. It’s not about how you feel second to second. It’s about what you’re making of your life and whether you can find a deep pride in who you are and what you’ve given. Because that’s so much more impactful, so much deeper than whether you’re happy or content or joyful. It’s okay to feel pain. In fact, if you can actually experience it without judgement, without you know, trying to fix anything; nothing is wrong with any of you. Nothing is wrong with me. I don’t care that I am sick. At all. Genuinely. If a cure came tomorrow, I wouldn’t care. Because that has not determined the quality of my life. I’m not trying to fix myself. My suffering has given me so much. And I’ve been able to make something and give something to people from it.”[viii]
And it is this realistic approach to a positive mindset, this ability of hers to embrace Cystic Fibrosis and be proud of the sagacity it gave her despite the fact that she had over thirty surgeries by the time she was twenty, that every day she had to spend four-hours of her precious time hooked up to a High-Frequency Chest Wall Oscillation vest,[ix] that she had to take over thirty medications a day, that she spent over a quarter of her life in the hospital, and that the disease was degenerative and only going to require more upkeep until her fast-approaching death, that is so exceptional. But the ultimate gift she had to give- a gift many of us aren’t lucky enough to be given until old age- is that she understood the innate value of her time and used it wisely to design her own powerful, contented existence, an existence that many of us only dream of, despite the fact that she lived a life many of us misjudge as unfortunate and utterly terrifying.
At thirteen, when Claire’s oxygen levels were plummeting and she realized she was dying, she explained through a TEDx talk that she, “felt grief for…the life [she] could have lived…mad at [herself]…thoroughly pissed…for waiting around for the world to tell [her] that [she] was okay even though she was sick; for waiting for someone to tell [her] that [she] was healthy enough, [she] was better enough, [she] was good enough to live the life [she] wanted to live.”[x] It was a powerful grief she didn’t expect to feel. But as she became older, and worked at living her live not in spite of but with acknowledgement of her illness, and spread her wisdom about terminal illness to an expanding community, she realized that she had become the person she was looking to be inspired by at twelve. She turned her life into a piece of art, molding herself into the person that she and others need. And because of that, she wouldn’t have to fear grief for that inevitable passing that all of us will one day face.
As she expressed in one of her last YouTube videos, she didn’t believe that you can ever prepare yourself to die. But you can prepare yourself to live a life that you can be proud of when that dying day comes, whether it comes at a young or old age. Claire only had twenty-one years of life on the planet. But what she did with those twenty-one years, even despite the hours of extra maintenance she had to perform every day to stay alive and care for herself, was more than the majority of us will do with eighty long years on this planet.
And because of that, her impact will continue past her death.
[i] Meet Claire, Finding Beauty in Sadness | My Last Days:
[ii] Such as: Essentials of Emergency Medicine: https://www.youtube.com/watch?v=SpO5fXz51kc, and what it feels like to die *reupload*: https://www.youtube.com/watch?v=Fz9L6WobD4.
[iii] The Art of Living: https://www.youtube.com/watch?v=77cZndFoZPQ.
[iv] YouTube account of Claire Wineland: https://www.youtube.com/channel/UCTw8xGVrk4FTAJwMG6mw22w.
[v] Hospital Jam Session with My Dad – “Knockin’ On Heaven’s Door”: https://www.youtube.com/watch?v=HhchXPnCQOQ.
[vi] Here are some other inspiring individuals for you to discover: My Hardening Skin is turning me into a Doll: https://www.youtube.com/watch?v=UTSXPs6ECXg and The Boy who can see without Eyes: https://www.youtube.com/watch?v=Wby1CIhnYWI.
[vii] (In many societies, powerful characteristics are seen as: Nordic, male, angular jaw, tall, broad…)
[viii] Don’t wait to be healed to start serving humanity: https://www.youtube.com/watch?v=HH3m1OSiOT0.
[ix] WHAT IS “THE VEST” CYSTIC FIBROSIS TREATMENT: https://www.youtube.com/watch?v=XjeVYmmP7Gi.
[x] Essentials of Emergency Medicine:https://www.youtube.com/watch?v=SpO5fXz51kc.
Claire Lucia Wineland
April 10, 1997 – September 2, 2018
“We’ve forgotten that these issues in our life aren’t really issues at all. They are stepping stools to awesomeness (in teenager terms). Um, but really, they are these gateways to amazing possibilities. And we’ve kind of forgotten about that.”