What Claire Wineland Taught Me About Living Well With Chronic Illness

There is a fragility to life that you become acutely aware of when you dive into the chronic illness community. It’s that constant reminder that life is precious, and it’s to be cherished even in the most trying of times. Our society is so built on waiting for things to be perfect before we can be happy or our lives can start. But what if we could meet life right where we are and choose to be grateful for it anyway? When you see how fleeting life can be and how hard fought each breath is, it reminds you to stop living in the sorrow of what pains you and rather in the light of being present.

I believe Jordan Peterson stated it so eloquently when he said:

“In order to stay alive it’s necessary to get the balance between death and life right. Because death keeps you alive. Your cells die and regenerate all the time. And if they die too much, then you die. And if they don’t die enough well then you also die, because you end up with cancer or something like that. You have to get the balance between death and life just right in order to survive.“

To appreciate the juggling act that the human body must do to keep you upright and functioning is to understand that the breath you are taking right now is hard fought. Every breath we take is at its core the one thing which connects us all, no matter our background, race or religion. It’s the one thing everyone on this earth can be grateful for, no matter what circumstances lie ahead. Because to breathe is to be alive. And to be alive is to have a say in this world; it’s to change this world forever by leaving an imprint all your own.

Hands down one of the most taxing parts of being a part of the chronic illness community is learning that friends you’ve made along the way passed away due to their illness. The grief and sadness pierces my soul, knowing they are no longer with us. It serves as a shock to my core that wakes me up from any pity party I might be having for myself.

“Wake up Christina, your life is right in front of you. Cherish it. Grasp it.”

Yes, I always tell people to feel how they need to feel, and to never compare their struggles to others because trials and tribulations hurt for everyone. But the one thing we can all agree upon is that we are here, we are alive. And there are those who fought like hell through their illness who are not. And I think to be given the blessing to fight another day, another hour, another moment is in and of itself a gift. So even if you feel like you are in a moment where there is absolutely nothing that you feel grateful for, simply take your hand and place it over your heart. Do you feel that? It’s your heart beating and your chest expanding to breathe another breath.

I want to share a story from someone who inspires me – not for her courage to have lived in the face of adversity, but for her persistence to thrive despite it. Claire Wineland recently passed away after a failed lung transplant for her cystic fibrosis, but I will never forget something she said during an Instagram Live Q&A about a week before her surgery. She was on the wait list for new lungs, and although she was very ill she was looking for a new apartment and planning for her future (often over taxing herself in the process). When asked why she didn’t just wait to do all of those things after she got her transplant and could live again, she responded very eloquently by saying that she doesn’t want to resent her life; she wants to cherish it and live it on her terms while she is still here to do so. Perhaps that sentiment feels much larger now in her passing, but I think it serves as a sharp reminder of the fleeting nature of life. If we wait to be well or to have ideal circumstances to be grateful and see the beauty around us, we may life a live of only grief.

​Claire was a bright light who lived a thousand lifetimes in the time most of us live just one. She squeezed the goodness out of every moment, and if you didn’t see her oxygen tank you would have never known she was even ill because she spoke of life with such a joyful poignance that it will stay with me forever.

​”Life is not just about being happy. 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.”

xoxo,
Christina