Claire Wineland Quotes, remembering respected health advocate

The title of this article should actually say that Claire Wineland was a “Life Advocate.” She was the epitome of MLK’s quote, “It doesn’t matter how long you live, but how well you do it.”

I didn’t know Claire personally, but like so many of her followers on social media, those who read her book or had the pleasure of attending one of her talks in person, she felt like a friend. She had a talent for drawing people in, then she would reveal her truths to us.

Like a teenage philosopher, the Cystic Fibrosis fighter pondered mortality, how to live boldly in spite of limitations, and the depth of the human spirit from her social media pages and youtube channel. She said that her two favorite hobbies were to think and talk, so she put her best gifts to good use!

“I don’t agree to do these talks to tell you how to have a happy life. Life is hard. It’s painful. You can suffer. You can experience what it’s like to be a human being with all of the messy gross emotions that come with it, and still make a life that you are very very proud of.”

Sometimes Claire shared her thought provoking videos from her apartment, or laying in a hospital bed; we once even found her clothed in a hot bathtub!

That was Claire Wineland. She was spunky and full of spirit, never ceasing to surprise or defy expectations!

When she spoke, her wisdom and maturity made you forget that she was only in her late teens– just coming into her early 20’s.

As a young adult, she became a speaker, author, and founder of a non-profit for kids with her condition Cystic Fibrosis called Claire’s Place Foundation. Going on speaking engagements (when she was well enough), afforded her opportunities to see more of the world, to travel, to make friends, stay in hotels instead of hospitals, and gave her new life experiences which she cherished.

Through her professionalism in health activism and being in the public eye, Claire Wineland helped make the work of health advocacy a more respected job title.

She took a strong stance on addressing the way the world infantalizes young people living with illness, something she understood all too well growing up with CF.

She was a rare soul as much as her perspective on life was unique. At times controversial, Claire shared that happiness itself wasn’t the key to life. Instead, she maintained that living out our purpose through service is where we find deeper meaning.

In one of her last videos, Claire spoke passionately about her charity she created she referred to as her “baby”. She spoke on the undenianble worth she believed everyone has regardless of limitations. This had been her battlecry throughout her career, which made her beloved to people living with disabilities of all types.

Her comments section always exploded with thoughtful discussions, as she had a way of eliciting meaningful conversations. People would engage one another on life, death, happiness, and pondering the true meaning of existence.

Claire’s following consists of terminally ill individuals, healthy young people, adults, Cystic Fibrosis fighters, and people with long term chronic diseases like myself. (Even celebrities from Bernie Sanders to Anne Hathaway are part of Claire’s fan club.) You can imagine the conversations she sparked, and the perspectives she challenged!

Claire had fought to outlive her life expectancy, and she overcame near-death several times. Because of her experiences, she believed in demystifying mortality, and used her prognosis to wake us up into living our own lives more fruitfully.

In one of the last videos she shared, she plead for support to get a lung transplant- something she once vowed she would never agree to. Though she belly-laughed and joked through her former talks, in this one, her tears flowed. She shared the possibilities and dreams she saw for herself if the transplant was a success. For the first time in her life, she was looking forward to her future. An enormous outpouring of both financial and heartfelt support followed from her fans.

More than enough funding was donated to cover costs of her medical care. A video of Claire’s genuine appreciation followed in return. She expressed her humility and surprise that so many contributed and reached out to encourage her. The overflow of funds were given to Claire’s Cystic Fibrosis Foundation.

Because of her online friends, Claire went into her surgery overjoyed with hope, gratitude, and feeling love from hundreds of thousands worldwide.

The people she had inspired and imparted her wisdom to for years were able to send her off to her surgery with well wishes and a flooding of encouragement.

She is said to have suffered a stroke on September 2, 2018. Claire was put into a medically induced coma, and taken off of life support one week post-operation. Her parents say she passed peacefully.

She was 21 years old.

Sincere condolences to the Wineland family. As a long time chronic illness sufferer, Claire touched my life and heart as she did for so many others.

I leave you with my favorite video of Claire’s, one of her most powerful TedX talks. I hope you will watch and share her message… In loving memory of Claire.

Inspiration, for a bad day with Chronic Pain

You have every right to feel overwhelmed, as though no one understands. Maybe you feel like a burden, afraid of your future, or even lost of all hope. As far as I know, everyone living with long-term illness understands these feelings well. I know I do.
It doesn’t make it any less horrible to know that 100 million Americans with chronic pain can relate to that feeling, but it may help in some way to remember that your feelings are absolutely normal.
Illness, pain, long-suffering literally deprive the brain of the chemicals and hormones required to feel a general sense of happiness and peace. It’s not pain or illness alone that causes depression, but instead the high levels of physical stress, constantly, over a long period of time which can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like serotonin, oxytocin, and dopamine are no longer in balance to counter feelings like uselnessness, loneliness, fear, and hopelessness.

What might have been a passing thought of fear, thanks to the ongoing imbalance in the body, can become a spiraling pit of despair and feelings of doom. Pain can wriggle into your very soul, and drain you of every resource.

This month is my 13 year anniversary with chronic pain (RSD/CRPS). Then when the condition progressed to stage four with comorbidities 6 years ago, I felt as though I completely disappeared. Illness swallowed me up.

If anyone is reading this and is being swallowed up by sickness, then you know it’s the loneliest feeling in the world to watch everyone go on and move forward with their lives while you fight for your own in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?

I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has hacked.

You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be.

You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning valuable lessons from this battle that no one can ever take away from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing.
If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them?
You can do this. Though you may be exhausted and fragile right now, and you aren’t even sure how you’ll go on another day, the pain might be pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every sickening treatment, painful surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today.
You are beautiful. Sometimes we lose touch with our bodies as protection from all of the horrors we are living through physically. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (P.S. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.
You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from people we care for. Who we once were can float away, and illness can feel as though it’s taking us over. You are still her. You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s.
One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perceptions change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE) than we hear about people regaining health and wellness.
There is no doctor or article online that can assure you what tomorrow will hold. As much as your body and mind whisper terrifying words like “incurable, degenerative, progressive,” it’s easy to let that be your daily mantra, or you can make HOPE become your weapon of choice.

As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!

“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”

-Marion Zimmer Bradley

Thank you to The Mighty for choosing my article for publication.

What is Your Purpose?

We should all have a calling, right? A passion that drives us. “If you find your purpose, you will never work a day in your life”, and will be wonderfully successful, respected, admired, and make loads of money. At least, that’s what I’ve always heard, so it must be true. 

What if I told you that having a “Life’s Purpose” is a myth. 

We are taught by society, and modern culture that to be fulfilled, we have to find our one special calling, that career we love, and it will bring us prosperity and fortune all of our days. 

Why is this philosophy problematic? 

…Because we aren’t built to have only one purpose. We are each meant to fulfill many unique and diverse missions throughout our lives. We have dreams and goals for ourselves, but we are multidimensional beings and our greatest life passions and fulfillments may or may not be wrapped up in that job we desire. 

Most of the time when we say, “What is God’s will for my life?” We are referring to our careers, right? But God allows purpose to thrive in so many aspects of our lives.

You can be a passionate artist, a wife, mother, doctor, friend, AND a passionate writer. You can find calling, drive, and fulfillment in multiple areas of your life. 

The world hands us such an impossible task of figuring out our one and only sparkling, unicorn reason for existing, and it puts sooooo much pressure on all of us. Once we believe we’ve found our “life’s calling”, complete our degrees or training, we can finally pour our passion into the work… but some time later, there’s an itch that comes over us. We feel unsettled, maybe even claustrophobic. If you’ve felt this way before, it’s miserable. And it’s also a huge disappointment that the dream we wished for doesn’t feel like we hoped it would. You do everything you can to refresh that passion you once had in your work, however, more than likely, the feeling of displacement whittles away at your spirit. 

A Life’s Purpose is not the same as a Life of Purpose. 

We were not built to stay in one place. God has so many plans for each of us. Some of us are amazing multi-taskers, juggling projects and people all at once, and others of us pour everything we have into one job, person, or other undertaking, and then we are diverted to our next chapters. One season ends, and the next begins. Sometimes there are painful seasons in between for our growth, for pruning, and for us to prepare for whatever we are meant to do next. And for some of us, those painful seasons last, so we seek out purpose and meaning in the big and small moments. 

Callings come in seasons. We all hear the stories again and again: Someone had a career they loved, then a crisis struck, but that sideroad somehow illuminated a new and exciting path. It happens all the time. 

Like me, you might be asking, “What is God’s will for my life now?” You might feel a little bit lost in the fog, the upside-down, so to speak. Very rarely, we have these beautiful gifts of some extended time when we are just waiting to find out- what’s next? It can seem like forever, but rest assured, you are never forgotten by your Creator. 

I’m not very good at being still and peaceful while I wait, because I am so impatient. It is such a comfort to know, we are always fulfilling our Life’s Purpose when our desire is to please God. When you’re seeking to do the next right thing, you can be at ease that you are living inside of your destiny.  

Author Interview & Book Giveaway! But God, wouldn’t I be more useful to You if I were Healthy?

Thank you, Esther Smith for joining us to discuss your brand new book, “But God, wouldn’t I be more useful to you if I were healthy?” Congratulations on being Amazon’s #1 hot new release in Christian Counseling and Recovery in your first week as a published author! Let’s jump in and talk more about your book!

1.    Did you do anything special to celebrate the release of your first book? ~or~ How did you reward yourself when you completed writing “But God, wouldn’t I be more useful to you if I were healthy?”

The night my book was released I celebrated with dark chocolate and a glass of red wine. My favorite indulgence. I am hoping to get out to my favorite restaurant this month, and that will definitely be a part of the celebration. To me celebration equals all of my favorite foods!

2.    Aside from writing, how do you enjoy spending your free time? (hobbies/activities)

I have had a hard time coming up with hobbies I enjoy since chronic pain became a part of my life, which is one of the reasons I turned to writing in my free time. But, I do enjoy reading, lying out at the local pool, and cooking delicious recipes.

3.    How would you describe your personal writing process? (Are you research-driven, methodical, intuitive, spiritually motivated, etc. Please explain).

 For me, writing typically looks like sitting down with an empty head and writing about a topic that is important to me without much prior thought. Oftentimes, I don’t know what I think about a particular topic until I put it into words on paper. It is the act of typing and writing freely without restraint that brings me to my best ideas. Then I come back later with research, additional stories, and more attention to detail. Those final changes are important, but it is the original brainstorming that gives life to my words.

4.    Thus far, what is your favorite aspect of becoming a published author? (designing the cover of your book, the writing process itself, doing interviews like these, etc.)

 I have loved hearing feedback from readers. It is the best feeling in the world when someone tells me that my book helped them in some way or that they were challenged to think differently by something that I wrote.

What is your least favorite aspect of becoming a published author? (the editing process, marketing, doing interviews like these, etc.)

I greatly dislike wearing all of the hats in the publishing process. I was not able to pay for help for any part of my book, so I edited it myself, though I am far from an editor. I also designed the book cover, though design is not my strong point. I would much prefer to focus on my strengths and get help with the rest. 

5.    “Resting as an act of faith” is one part of your book I felt was particularly inspired, and is wisdom that both well and chronically ill individuals can benefit from. Can you explain what in your own life lead you to write about resting by faith?  

For so long I tried to maintain the same life I had always lived even though chronic pain made this difficult. I became burned out, and my health started to regress because I was doing more than my body could handle. I maintained all my responsibilities because I felt guilty about giving them up. But I finally realized that letting go of what was physically harmful to my body was not something to feel guilty about. I realized that I was not stewarding my body well, and that being faithful with the body I had been given meant letting go of things that were good but harmful to me. It was a freeing realization and allowed me to better serve in the areas that I didn’t give up.

6.    One of your readers, Ginny asks: Did you have any hesitation in sharing the personal thoughts expressed in your book? (she adds that she can’t wait for your next book!)

Yes! My book was more personal than much of my blog. I poured out some of my deepest fears and failures. Releasing the book left me feeling so vulnerable. But hearing readers say that they could relate helped a lot. It all felt worth it in the end.

7.    Blog follower, Max asks: What was your greatest challenge in writing this book?

 

 For a long time, I had the basis of good material and important points that I wanted to convey, but I didn’t know how to make it interesting. Like I mentioned before, I did have hesitation about sharing personal thoughts and stories, so I left those out at first. As I read through my material and shared it with a few close friends, I could tell that the material was dry. Perhaps I was making good points, but what good was that if no one wanted to read it in the end? My greatest challenge was growing in my ability to write content that had solid ideas conveyed through interesting stories.

8.    Because I follow your blog LifeinSlowMotionblog.com, I know that you live with chronic pain. How has Chronic Pain influenced you or inspired you to write more often, or has it?

Before chronic pain, I would not have called myself a writer. It was chronic pain that gave me something important to write about. As I looked for answers to my own questions, I found limited resources on chronic pain from a Christian perspective. Many of the resources I did find were either lacking in depth or didn’t seem to understand the actual experience of chronic pain. As both a Christian counselor and an individual with chronic pain, I felt able to address the topic with both depth and insight. If not me, who else would do it? That is what led me to writing.

9. “Giving out of a poverty of health” was one of my favorite pieces of wisdom you shared in your book. Can you give a brief example (or explanation) of giving from a poverty of health?

 At one point my health regressed to where I could only work at my job as a counselor 2-4 hours a week. And even that felt almost impossible to maintain. I would go in every Wednesday to see as few as one or two counselees and then drag myself home. It felt ridiculous to work so little, and I seriously considered quitting my job. I am so glad I didn’t. My one or two counselees mattered. I may not have counseled a great number of individuals, but I did my best with the few I had. 

10.    Can you give us a hint of the focus of your next book?

 I am going back and forth between a few different ideas. The next book in the Chronic Pain and the Christian Life series may be about mourning and grief in the context of pain and illness. Or, it may be about communicating our pain and relationships with others. I also want to write about the shame of chronic pain at some point. Too many ideas and too little time! But, I am working towards the next one coming out this fall.

 

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~Reader Reviews~

“This is the first book of its kind: reconciling faith with illness.”

-Mary Jane Gonzales

“It’s a wonderful book, it is most encouraging and well written. It’s an excellent read for both sufferers of chronic pain and the people who care for them.”

-Nancy Belz

“I love her honesty and the reflection questions that conclude this wonderful book- I found insight- comfort- motivation, and hope in Esther Smith’s sharing. This would be a great book for a small group study in person or online!”

-Ginny Law

Read my review and others here

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How to win a free signed copy or e-book?

To participate in the random book give-away drawing, in the comments section below, let us know:

1. Where you found the link to this interview

2. Tell us where on social media you are sharing this link

I will contact the winner Friday, Aug. 5th! Good luck, and thank you for reading!

 

But God, Wouldn’t I be More Useful to You if I Were Healthy? is Available to purchase on Amazon in paperback or ebook.

I don’t have the Privilege of opting out

I can’t sleep. I feel so helpless and outraged over the losses and violence in the last week. I don’t want to pray about it. I don’t want to blog about it. I definitely don’t want to discuss it incessantly with others on facebook or twitter while we sit safely in our homes.

I want to do something.

I want to help.

I want kids to stop being killed on our American streets: black kids, gay kids, cops… are we at war? Because we are tearing our own people apart.

I don’t actually feel like I have a card to play. I’m a white woman in a safe neighborhood. I have plenty to eat. I am certain I’m privileged in ways that I haven’t even thought about.

Until I was in high school, I was raised in a home with bars on the windows, guns shooting every night, across the street from the projects, all the kids in the community had to be inside by dark. We were the only white family around, but our neighborhood was so diverse, that I grew up without the concept of racial divisions. But this world is going backward. My mother said yesterday that this week reminds her of the riots of 1968 as tears rolled down her face. We are going backward.

I told my sister this weekend that I’ve been having nightmares about her upcoming vacation to FL ever since 50 kids out at a gay night club were murdered. She said that she and my sister-in-law have been cautious after dark, and try to stay around areas with police even if they are out to eat after the sun goes down. They are an interracial gay couple, and theoretically this America accepts them today. But if you follow the news, you know that they BOTH remain in danger, so they show up in my bad dreams.

There’s a whole lot of sharing right now about forgiveness, unity, and praying from white people like me, but where is the outrage? Where is the responsibility to DO SOMETHING?

I might be white, but I don’t feel I have the privilege of doing nothing right now.

We are ALL responsible, don’t you see? This our world.

Use the hands and will and talents God blessed you with to rise up and help when something terrible happens in our country. Give blood, go to a peace rally, set up a GoFundMe page for one of the families involved in the shootings, organize a fundraiser in your community for an ending gun violence organization.

Instead, a lot of people are saying things like, “all lives matter” not just “black lives matter.”

Listen, it’s easy to say that when you aren’t part of a disenfranchised community who is desperate for a voice. If you have said that, remember that you have children right by you who don’t have enough to eat, young women, men and children being sold into sex slavery right in your community, and someone within walking distance is home-bound for the rest of their lives because we haven’t received competent medical care. These lives matter, and there are groups concerned to raise awareness for these victims as well.

My point is that it’s hypocritical to give children with autism a voice who need it, and also say that the black community shouldn’t raise its voice also. To have an ALL LIVES MATTER world, we have to be equals, and ALL have an equally loud voice.

You don’t have to use a hashtag or join a group of protesters to help build equality. Compassion, empathy, and action are the missing links that can help build bridges that we are craving for unity.

I pray this video from poet, author, and life force of nature, Maya Angelou is a peace to your heart, and an encouragement for you as she is for me.

I may feel helpless today, but never hopeless for change. Please be safe. God be with you.

 

 

 

“Waiting for my Real Life to Begin”

Woke up with this song weighing heavy on my heart and in my head. Just because I cannot listen doesn’t keep music from playing inside of me. If you are like me and have trouble listening to music, the video includes the lyrics.

The second verse: “When I awoke today suddenly nothing happened.
But in my dreams I slew the DRAGON” plays into living with chronic illness and life now from a bed. But just as Colin Hay’s “love” keeps telling him to let the sun shine in and keeps reminding him there is already a plan; this is the same knowledge I have that God has a plan for me also. Not just in the future, but right now… I’m living it. My real life has already begun- even when it’s hard to feel it.

Sometimes we keep waiting for everything good to start up, and our purpose is right there in front of us. God bless you.