Have A Little Faith in We

It is human nature to wonder if you will live your life to the fullest. Do we choose the right passions? Surround ourselves with the right people? Select the correct career? Spend our most valuable resources: time, money and energy on the right things? Will we leave the world better than we found it? Claire Wineland stopped wondering and just started doing …. and left this world better than she found it.

Claire Wineland was a CFer who choose to share her chronic illness journey with the world. Through her YouTube channel, social media prescenece and foundation she took the narrative of her story and the story of those afflicted with this illness and changed it in profound ways. By the world’s definition the life of a person who is sick is broken, limited, and cause for pity (pity for self, pity from others…. really just plain pitiful). But that is not what Claire truly saw when looking at herself or those with CF – so she used her life to change that perception.

Here is the amazing thing about Claire- she completed that change with honesty. There are certainly MANY incredible feats she overcame – like death or starting her own foundation at the age when most people are still in school. But she wasn’t just about the moments of victory, she also spoke to the moments of defeat. CF is terminal and although she believed in hospitals rooms made to look pretty or encouraging laughter as often as possible – she also talked about suffering and living life while actively dying.

There were three messages of Claire’s that changed my perception of both CF and how to live.

Suffering is not a bad thing and a happy life all the time is not real. For all of Claire’s life people said “I am sorry your sick” – like she automatically had a bad life or she couldn’t actually live it until she was better …. which would never happen. So Claire learned to live as a sick person. No one’s life is happy all the time … that is a lie we all have bought into hoping it will come true. But the truth is suffering is real and can be a really good thing…. in fact we can learn to still live, even improve the lives of others, when we are suffering, its the opportunity to look beyond yourself. As a perfectionist, I always assume things must be perfect before I start my new goal or adventure or effort. Waiting for perfection is like waiting for a unicorn and I could miss my whole life waiting. And let’s not even get started on waiting to start something until it “feels right” – when you can’t breathe, nothing feels right and you gotta live any way….. maybe that is how we all should live. If Claire waited to help others til she was healthy, the world would never have known her gifts – don’t let lack of perfection slow living down.

That message here: https://youtu.be/-OCT_7e6a5k

Danny and I have been together for 13 years and done a lot of unique life together in that time. I can’t claim to understand how he feels, but I can assure you I have logged the time in listening and learning. Honestly though, sometimes there are just things that are too hard to explain. Claire talked honestly about the let down of getting sick. Tune-ups are directly linked to how well a patient takes care of themselves…. over the course of HOURS a day. So often I would get frustrated with Danny to just do the thing (meds, treatment, eat balanced, get more sleep) – because it was actually life or death. But isn’t my ability to exercise, not eat donuts, or reduce my stress life or death too? When I have had a long day and the choice is Netflix or a run – do  I push myself? Then how can I expect him to just strap on his vest that would likely cause him to throw up and do yet ANOTHER treatment for the day. But, when CF patients don’t – the hospital comes a calling. This means stress, disappointment, expenses…. all cause they wanted a night off. That guilt is unimaginable….. and it does wear on CF patients when they have to wonder if they would have more life if they personally just did better. It took Claire’s honesty for me to really see that and it opened my eyes to further layers Dan faces.

That message here: https://youtu.be/HH3m1OSiOT0

In recent years Claire’s messages were focused more around her decision to not transplant. It isn’t for everyone and she felt strongly it was not for her. The journey long, emotionally exhausting and expensive….. if she lived she would be a burden on her family and if she died there would still be burden and no Claire. She couldn’t do that and rather chose to embrace the life she was given: terminal with CF. Then in 2018 things changed…. Claire couldn’t even live what life she did have because she was too sick. Her hope of giving and having life until the end became impossible and suddenly she knew she wasn’t done on this earth. I am simplifying this decision immensely. But I could never put to words what it is like to follow her decision making process on her videos – that emotion, that fear, that hope….. transplant is just an option for care for CF patients – its not required. We walked through the decision process and I can honestly say now, we walked a lot of it numb. Eventually Danny just gave in and opted to do it….. and the more stories I hear, the more I realize that is the most common situation: they just have to give into it.  The delicateness of this process makes you see things very differently and even having walked through it with my own husband I was grateful for Claire being willing to share it with the world in ways so many of us never could. The world is better for being able to witness it.

That message here: https://youtu.be/UaDUKcXgp5c

There are many things Claire has accomplished and I would encourage you to check out her YouTube page and her TED talks. But Claire’s biggest hope was to help others and her foundation raises money for CF families who are struggling with the weight of real world (bills, jobs, responsibilities) and needing to just be present with their sick family member.  Check it out here.

Ultimately Claire would embark on the transplant journey but pass away just days following her double lung transplant due to a stroke (August 2018). The gifts she gave to the CF community and the world don’t seem to match the years she spent walking this earth. So Claire, please know your mission continues to be fulfilled – you lived life and made it possible for others to learn how to do the same. Thank you, Claire.

Thank you so much for reading and remember to make it a great day!

Jackie