Eight year old Ellie Pruitt passed away suddenly this past February from complications of the autoimmune disease, Juvenile Arthritis.
Though Ellie was only 8 years old, her impact has been incalculable. In her short life, she helped raise thousands of dollars and broadened awareness for the Juvenile Arthritis Foundation through her family’s fundraisers at her elementary school in the Atlanta area.
Just after her tragic passing, Ellie’s “Kindness List” went viral, reaching all around the state of Georgia, as shops and restaurants changed their marquee signs in remembrance, elementary schools and churches honored her memory, along with social media and news outlets all sharing her message to “Have Fun & Love Always.”
This past Tuesday, to celebrate what would have been Ellie’s 9th birthday, October 20th, 2020, was named, “Kindness Day” by her town. To observe this special holiday, we wore her favorite color, yellow and celebrated her birthday by doing intentional acts of kindness.💛
Many on social media changed their profile pictures to yellow, while others shared kindness-centered memes, hashtagging their posts with #ElliesDay.
One woman cashed in her spare coins to leave a generous tip for her waitress on Tuesday. Another woman handed out gift cards to children for ice cream- YUM! And another young lady shared a photo of herself at a blood bank, donating in Ellie’s honor!
Legacy Ridge Assisted Living in Woodstock, GA organized a special balloon release to commemorate Kindness Day. Even though Covid19 prevents the residents from seeing their loved ones inside the facility, quarantine didn’t stop them from enjoying the beautiful fall day! They look lovely posing with their yellow smiling balloons. One resident loved Ellie’s list so much, she pledged to abide by the 5th rule: “Love Always.”
There were many more noteworthy acts to mention, but the people who don’t have access to social media are the ones who truly did the most in remembrance of #ElliesDay…the kids! Hundreds of kids from all around the area rocked their yellow, and quietly acted on intentional kindnesses to help others and give to their fellow students, teachers and family members in celebration of Ellie Pruitt’s heavenly birthday.
I dare say that the youngest participants will be the most influenced by this event, learning the values of love and kindness, to carry with them throughout their lives.
At the end of the day, Ellie’s family shared a post on social media to thank everyone who participated in the celebration of their late daughter’s birthday. They were clearly touched by how many individuals and businesses participated.
The below message was shared by Ellie’s mother, Heather Pruitt:
“I am blown away by what a huge success #Elliesday was. I started the day trying to keep a list of all the acts of kindness that I was hearing about but by about 8 am I had already lost track! I know that Ellie was smiling down on each one of these kind acts throughout the day and had the best birthday ever partying with Jesus! Thank you to everyone for making this a day for us to look forward to and not be afraid of. It was full of all kinds of emotions but we certainly felt all the love!💛”
This is Ellie’s loving, living legacy which she left with us to remind us all how we should treat one another.
Thank you, dear Ellie💛 We all need this reminder right now!💛
#KindnessDay #AlwaysLove #ElliesDay
More info below:
artwork by Ruben Ireland
In the past, I’ve written on rare disease and adjusting to life after becoming homebound. As the world learns to cope with the reality of life at home, threatened by a terrifying virus, and concerned for what the future has in store, this is the only topic I’m compelled to write about today.
While we live under the shadow of Covid19, how are you handling the images in the media? How are you coping with social distancing, and isolation? Have any of your family or friends tested positive?
Here we’ll be discussing some of the feelings that come along with heightened stress, and why it can make our lives seem out of control.
In a crisis, the natural reaction is to feel shocked, upset, overwhelmed, concerned, confused, sorrowful, and/or physically agitated. If these feelings sound familiar to you, then take some small comfort in knowing that you’re reacting like a healthy, normal human being.
Though these feelings can be physically and emotionally difficult, they are completely understandable under the given circumstances.
On the flip side, if you were living without a care in the world, then one might wonder if you understood the gravity of the situation. Staying in denial might feel better temporarily, but it can lead you to take dangerous risks for yourself and your family. Failing to grasp the seriousness of our situation may lead you to go as far as spreading misinformation or even the virus itself.
Concern serves a purpose and it’s the appropriate reaction for survival. Concern can be a very useful emotion, and keeps you more alerted to possible dangers.
We generally try to avoid or ignore our concerns and feelings of stress, but in a crisis situation, remember that feelings of anxiety are there to serve a purpose. It’s perfectly understandable to be worried for your loved ones. It shows a heart of compassion; it can drive you to check on the people you care for, to listen to local authorities, and to go the extra mile to keep your family safe.
Everyone is sorting through their own unique life circumstances due to the “Stay at Home” orders. If your regular routine has been interrupted by the quarantine, then you’re even more likely to feel the pressure. When you lose control over your plans, you can begin feeling as though life has become chaotic, and you’re helpless to change it.
Losing your workday and regular routine can also cause confusion, feeling a loss of accomplishment, lack of motivation, and feeling a sense of uselessness. Being alone with your thoughts in isolation all day removes your typical daily distractions which can make stress seem even more pronounced!
These are distressing times, and the images in the news can play up our worst fears. It’s the media’s job to capitalize on the most distressing images and stories- the ones that grab our attention, and get our adrenaline pumping. I would caution anyone from watching too much broadcast news. Especially if you’re home with access to the news all day; it’s guaranteed to pump the volume up on your stress. The same goes for unsubstantiated conspiracy posts on social media which are meant to tap into your deepest fears.
In the moments when anxious thoughts flood your mind, logic won’t always prevail. Your survival instincts can begin to override. During periods of crisis and high stress, you may find yourself in “Survival Mode” (Fight-or-Flight).
If so, you might be experiencing: nervousness, sleeplessness, bursts of adrenaline, agitation, excessive loneliness, intrusive thoughts, racing mind, mood swings, sudden bouts of exhaustion, and confusion.
In survival mode, we instinctively want to fix things. We feel the need to actively find solutions, which is a great motivator, however, it can also lead to feeling helpless if we don’t have ways to exercise these desires. Feeling helpless combined with high stress and isolation can be a slippery slope to feelings of worthlessness. If you have a family member with a history of depression, try to check in with them during this time, and let them know how much they mean to you ❤
You may not be able to find a cure for Covid19 or go back into work yet, but using your energy to do a hands-on project at home will help you get a better sense of control, and therein begins your new routine.
Building a new routine at home will help you feel more in control. Building a routine can be as simple as getting up at the same time each day, making breakfast, and limiting your screen time.
On that note, I would encourage you to avoid the common terms “positive” and “negative” emotions, and instead give yourself permission to feel whatever you’re feeling. Specifically, labeling emotions as “negative” can make us feel as though sadness, loss, heartbreak, and frustration, are somehow forbidden. If we view our most challenging feelings as “negative,” it can unintentionally, cause a sense of shame or wrongdoing. Though some feelings are uncomfortable, they help us learn, grow and build character.
Acknowledging our full experience, however difficult, can also allow us to have more empathy and compassion for others.
Seasons of struggle have a way of making us feel alone inside of our pain. If it seems as though no one understands, if you’re feeling withdrawn, depressed and/or have a sense of doom, I would urge you to contact a counselor through an online therapy app. Please take good and gentle care of yourself! (You’re the only beautiful you that we will ever have.)
We should all try to reach out to our friends and family by video chat during this quarantine for some social interaction, get some fresh air, and find creative ways to connect with one another (safely) online.
If you’re staying at home, and observing social distancing, I thank you personally on behalf of my immunosuppressed self and all of us who are at higher risk. After almost 9 years, I understand that the idea of being confined to your home can at times sound like a prison- to be given boundaries you can’t cross. But this boundary is to keep you safe, to keep the virus out, not to make us feel trapped or alone.This season will be over soon. For now, let’s make the most of this time and try to be the best versions of ourselves we can be in the face of hardship. Reach out, check on your elderly friends and those with disabilities and chronic illness, since they may have difficulty getting basics. Caregivers and delivery programs may not be serving them right now, so an offer to help might be appreciated.
Most of all, I want to remind you that you’re not alone. The entire world is going through this difficult time collectively. Thank you for continuing to help your community by staying home, and remaining socially distant. It’s a sacrifice you’re making for the greater good!
Keeping our healthcare professionals, essential workers, and all those fighting this virus in our prayers and on our hearts. Also praying for the safety, health and healing of our brothers and sisters around the world. Let this be a time of community, understanding, and finding more gratitude with every passing day. We hand over our fears and uncertainties, trust the future to you, and plant our feet in your eternal hope. Amen.
God be with you.
Thank you for reading. Take good care, and stay well. -Mary
How to manage anxiety in a changing world
Yesterday was my nurse/caregiver’s last day. She’s moving out of state, and is beginning her new life in semi retirement. I’m a bit anxious to find someone to fill her very large shoes, but truly excited for her and her new journey ahead. She has more than earned it after a lifetime of looking after people.
She began her nursing career by working in every single unit in the hospital, but in more recent years, she’s done the highly specialized job of a home healthcare worker. She will take on a patient if her church has been contacted with a special need in the community, but more often, she works in home hospice care. She has a calling for it.
You wouldn’t believe the stories she has told me over the last 2 years!
Like the one about the old man who she realized was in his final moments, so she ran upstairs to get his wife. She encouraged his wife to crawl into the bed with him, and tell him everything she wanted to say to him. His last breath was taken in the arms of the woman he spent his life with, as she whispered her love into his ear.
Another story is the not-so-old man who was fighting so hard to hang on. Finally, she asked his family to gather around his bed and tell him out loud that they were all there, and one by one they told him how much they each loved him. He hadn’t been conscious for some time, but he must have heard them because he let go that night, surrounded by his family.
(She says sometimes at the end, people wait to hear from a particular loved one before they can let go.)
Or the one about the woman who was rushed into the ER after a terrible car accident. Later, she was finally stabilized and unconscious when my nurse was cleaning her up.
Then suddenly the woman sat straight up, with her eyes looking wide in front of her, and said out loud, “Jesus, you’re here!”
Then she fell backward and flat lined.
This is how I see her. There are nurses and birthing coaches whose job is to help give birth to babies, but on the opposite end of life, she is there to help ease terminal individuals out of this world in their own natural time. Kind of beautiful, isn’t it?
She played a very different role in my life, however. She came in to assist me with errands and personal hygeine tasks. For me, it eases some of the stress on me and on my relationships to have a professional who I feel comfortable asking for personal assistance, as well as for the additional things I wouldn’t be inclined to burden someone else with. For example, if I’m feeling nauseous, on a rare occasion, I might ask her for a cup of herbal tea. I wouldn’t ever bother someone else to make me hot tea (literally never), but yesterday, the tea kept me from having to take my anti-nausea medications which sedate me, and it enabled me to eat something.
It might be a small favor from her perspective, but it’s a luxury most people in my position simply do without. I tend to ask for necessities like food, drink, and clothing, and have learned to let most other extras fall to the wayside. If you have someone in your life, whether it’s a spouse, parent, friend, or professional carer who is happy to do the extras on occasion, then you know how special those people are, and how much they care.
I can’t tell you how positive it is for a person’s mental health and well being to be given some options and control back… especially if they’ve had many of their personal freedoms taken, such as by disability or illness.
When she came into my life as a part time carer/helper, she understood what it’s like to be in that “in-between” stage after a divorce, and she also had the benefit of knowing me as a healthy
headstrong teenager. When I told her my secret– that I was hoping to move into a nearby apartment/ shared house, she was one of the few people who responded with excitement!
Amazingly, she didn’t ask if I was able, instead she saw it as a matter of making it possible. And then she helped me make it possible!
Together, we spent this entire last year planning, packing, moving, and then finding the right assistive devices to make the apartment accessible and safe. She was far from the only one, of course, but her belief and encouragement have been an incredible driving force and confidence builder.
This year has been such a positive growing time. I’m very glad that I took the leap toward independence, regardless of the obstacles. Looking back on the last 2 years with her, I believe that her timing in my life has been purposeful.
I’m going to miss her friendship the most, but as her friend, I’m so happy she’s having her own big life adventure. Maybe it’s silly but any sadness is being drowned out by the excitement I feel for her.
Now I’m praying for someone new- the right someone to come and lend me a gentle hand.
It can be a daunting prospect, but I’m choosing to trust that whoever it is will be the right person once again.
Thank you for visiting.
Take good and gentle care of yourself,
The Woman in Room Number Three by Karen Brown
Jesus I asked, would You please make me well, so I can find a new place to dwell,
Could You please heal my body, show me the way, I’m willing to do whatever You say.
Jesus I asked, could I just use one arm, this alone would work like a charm
To give me a life with so much less strife.
Oh Jesus, I asked, could You help me today to realize Your power in a whole new way?
Then Jesus responded, He answered me sure, showing me something I’d not seen before…
“My child I love you more than you know, and I’ve called you to be where no one will go,
In a place where I want My presence to show;
You see when you gave Me your life on that wonderful day,
I already had you walking the way that would reach those people who I wanted to touch;
How else will they know that I love them so much?
So smile your smile,
let them see My Life,
shown glowing in the midst of your strife;
And Oh My Child, you will very soon see, that you’ll be dancing with Me… for eternity.”
Thank you so much for giving your permission to share, author Karen Brown, and a special thank you to Nancy Belz.
Dear loyal readers of abodyofhope blog,
Yesterday morning I was notified of a spike in the page’s stats.
Nice, right? Wrong.
I later found out that several of my unfinished drafts were published to the live page without my knowledge.
If you follow abodyofhope and received several email updates yesterday, those articles were totally rogue works that I never intended to publish.
I want you to know firstly that your emails are secure. You recieved the automated emails only because my blog was updated. They are programmed by WordPress, and nothing there was compromised.
I’m still unsure how my blog’s interface was disturbed, however. Was it a glitch or a hack?
In 5 years of managing this page, nothing like this has ever occurred (yes, that’s an anniversary! 😊🎉).
To be honest with you, I was mortified yesterday morning.
The unfinished drafts you read were basically pages from my diary. I have struggled to write with clarity for the last year, which has lead to fewer updates here on the page. I still write on a weekly basis with the hope of publishing to the blog, so I have accumulated quite an archive of drafts. Yesterday you had a peek into about 7 of my attempts.
I shared a post regarding the incident on Facebook. To my surprise, I was met with several messages from regular readers who were so generous and encouraging.
They reminded me that I can trust you all. I can share my heart here even if it comes in a rough or raw package because you are interacting openly with me and with these stories– not sitting in judgment of me from a distance.
From what I gather, you enjoyed the articles, and someone said the content even helped them in some way.
Whether you read the leaked pieces or not, I want to thank you for following, for inspiring me with your stories and with your comments over the years, and for being thoughtful loyal readers whom I can trust with even the most sensitive topics. Will you please forgive me for the lack of writing? I will update you soon with all the new things I have been working on.
Once again, thank you so much for reading and take good care,
Did you know that being positive isn’t necessarily the same as being optimistic? Did you know that your methods for coping with stress might be hurting your health, even if they make you feel better?
There was an entire revolution in psychological treatment called “Positive Psychology” which began after the book Learned Optimism changed everything in the 90’s. Before that, psychological practices were geared toward treating severe functional mental illnesses.
The author of the breakthrough book, Martin Seligman, asked the question, why aren’t people fulfilled and thriving when we know more about human behavior than ever before?
Because he challenged the field of behavioral sciences, an entire branch of psychology became dedicated to helping (otherwise normally functioning) people become their best selves.
In his book, Learned Optimism, he discusses the surprising spike in depression, anxiety, suicide, and drug addiction when we live in a happiness-driven society. He believes it is much more than simply public awareness of mental health driving the rise in diagnoses.
In his book, he explains that children were once taught how to overcome obstacles, how to cope and persevere, however the focus in education has instead shifted to boosting self-confidence regardless of effort. Seligman theorized that the self esteem movement, which was standardized in classrooms around the country during the 80’s and 90’s, played a major role in changing the way early childhood minds develop and learn coping strategies.
One point that I found particularly interesting is that he proposes individuals of prior generations (Boomers and earlier) were raised to believe they were surrounded by an invisible support system.
Today, that sense of strong community doesn’t exist for most young people.
In the past, there was a sense that one’s support system shared responsibility for every success and failure. This support system contributed to the overall person that one became. Since there was an awareness that outside forces had a hand in their lives, when their hard work did pay off, they were happy to share their triumphs and celebrate with their circle of support. Likewise, when their attempts failed, they wouldn’t fall too far or stay down too long as they had a safety net ready to pick them up and get them back on their feet. Just as the successes were shared, the devastation of each loss fell not only on one person’s shoulders, but they shared it with their community.
In the past, community looked quite different than our version today. For most people, that community consists of acquaintances we selectively share information and photos with on social media. The community of today may give approval, encouragement or compassion, but is often lacking in deep supportive relationships and the accountability that Seligman discusses.
Americans once valued country, faith in government, religion, family, patriotism, even the President. People were raised connected to a personal faith in God; organized religion provided another strong support structure of people they viewed as their second family. They were inclined to make life long connections inside of their schools and residential areas where they were urged to be active citizens. Above all, the nuclear family was once the cornerstone of society.
Just the sheer idea that others believe in you can be the difference between a devastating pitfall that derails your life and a curve ball which you can bounce back from. Today, most don’t grow up ingrained with the same surrounding support system, lasting personal connections, or strong faith in God and country.
To clarify, I would personally never want to go back to those days, but learning about these changes in our community structure helped me understand how we see the world so differently, and why we might be developing such vastly different coping and social habits from our parents and grandparents.
We are independent. Our successes are our own to take pride in and celebrate. Most learn to have faith and rely only on themselves. There is great emphasis on self-determination, therefore we reap our own rewards when we succeed. But on the downside, our tools for coping with inevitable life failures and day to day stresses may unfortunately be lacking. We are taught that personal responsibility and success are absolutely everything, but when we fail (as we all do), the personal fallout can be emotionally and psychologically devastating…even traumatizing.
I was working on my Learned Optimism piece when I read an article on Resilience, and was surprised to find that the number one quality suggested in becoming more resilient is to create the same types of communal support that past generations grew up with (as Martin Seligman found).
Surrounding yourself with close connections, friends, family members, becoming more connected to faith, plugging into community, and making permanent, lasting relationships with “people who affirm you, recognize your strengths, natural, innate abilities, and provide the support and acceptance you need” will increase your resilience [Mary J. Yerkes].
More ways to become more resilient:
-Accept “good enough” instead of expecting perfection
-Focus on the things you can control and let go of the things you can’t
-Find deeper meaning in life
-Accept advice from your loved ones and those who know you best
-Take care of yourself
-Ask for/accept help
-Don’t be surprised when life changes suddenly
-Have faith that things will eventually get better
-Set goals you can achieve
Being resilient isn’t about silencing yourself through turmoil or ignoring your emotions, but resiliency is a method of utilizing multiple positive coping strategies along with a mindset that is always ready to “roll with the punches.”
Martin Seligman writes, “If we habitually believe, as does the pessimist, that failure is our fault, it will undermine everything we do.”
Pessimists feel personally responsible in all success and failure, and helpless to make changes. This thinking leads to tendencies for depression and anxiety. Chronic pessimists are also more likely to have health troubles later in life, according to research in behavioral science.
Does this mean that society’s focus on self-reliance and self esteem could be creating generations of pessimists? I don’t know if that’s true, but it would be very ironic in our happiness-driven, positivity-focused culture.
The good news is, both Resilience and Optimism can be learned!
If you are shopping for a loved one with a chronic illness, long-term illness, or disability, you may feel unsure of their needs, wants and special daily circumstances. Here are a variety of gift ideas meant to inspire, comfort, entertain, and they are appropriate for someone who is mostly confined to their home or uses a walking aid, if applicable. Here are several gift ideas along with advice and links to help you shop!
*Starred shops are run by disabled sellers.
Streaming video allows your chronic friend to watch movies and television any time instantly from anywhere. Especially on those bad days when doing nothing but resting is the best and only option, distraction therapy like settling in to watch great movies and television is a wonderful gift they will certainly thank you for. Netflix, Amazon Prime, or Hulu Plus are a few of the most popular video streaming subscriptions, and they all cost about $100 per year. The Amazon Prime subscription also allows access to a wide variety of ebooks, audio books, and music, alongside streaming video.
The Amazon Prime 2-day shipping feature is an great option for anyone who has trouble getting to the shops. In certain areas, Amazon has rolled out Fresh, a grocery delivery service which is another fabulous gift subscription.
An audio book subscription to Audible is a sweet gift in my opinion! If your loved one is like so many of us with chronic illnesses, reading becomes a tricky task due to blurry eyes, migraine headaches, brain fog, and more. Audio books can make reading enjoyable once again. It may or may not be on my Christmas list this year (hint dropped!).
“In Her Skin”
She hasn’t slept for days. The pain in her leg is like ten million tiny coal miners chipping away at her bone marrow with their axes, sledge hammers and sharp picks.
“When do these little guys ever take a lunch?” she wonders.
They set off fire bombs from the inside of her, destroying chunks of tissue, muscle, and shards of bone. They light the fuses and her nerves shoot like electricity from one end of her leg to the next, causing her to gasp for air.
“He has to help me. I have to make him realize what is happening to me. I cannot live like this. I will make him understand.”
She feels herself floating away, but the pain in her leg keeps pulling her back. It holds her captive.
She can’t keep her eyes open. Slow tears stream down her face. Flashes of today’s appointment and the last few appointments cut through the fog.
“She has CRPS,” says the fiancé with an obviousness in his voice. He assumes they will understand.
No, CRPS is a condition that the doctors and nurses do not recognize. Her swollen, blackened limb with sores developing around the foot do not remove the look of doubt from the physician’s face.
“She can see someone else for pain medication,” the doctor says, never looking at the girl’s face.
“Don’t stick her with any needles and keep away from this girl’s leg!” directs the angel nurse. She tapes a sign to the bed saying “No sticks. Don’t touch legs.”
“Your Dad and I have decided we want you out by tomorrow.”
This short story was originally published in 2014 after I was inspired by an amazing young woman I connected with in an online support group. Tragically, this young woman passed away recently due to CRPS, and lack of appropriate medical care. I’m sharing this again to honor her fight, and all of those battling intractable pain. For some of us, humane pain management is life and death.
November first kicks off Color the World Orange month, otherwise known as CRPS/RSD Awareness Month!
So much awareness has been raised over the years for our cause. It’s incredible how far we have come when I think of the increase in education, research, social awareness, physician availability, and treatment options developed over the years; it makes me proud to be among my fellow CRPS advocates and pain “warriors.” The CRPS community has grown tremendously in the last 14 years compared to where it used to be, largely thanks to social media.
I can’t imagine living in the same body and having no online resources, no diagnosis, and no community of fellow survivors. Without those advocates who went before us, we would still be facing this unimaginable pain alone.
Sometimes I get discouraged by the challenges our community faces, but then I remember what these awareness campaigns have accomplished over the years, and I’m reminded of the importance every voice has. We make strides by working together each November.
Everyone’s voice matters. Every single story matters. Your story is unique, and can change lives.
During awareness months like Color the World Orange, sharing your story is amplified by the thousands of people sharing theirs simultaneously.
Here are 10 Tips for raising even more awareness in every post you share this month:
1. Write out “Complex Regional Pain Syndrome.”
Many don’t know what CRPS or RSD stands for, much less what it means. We often take for granted that our friends and family know that it’s an incurable, degenerative neurological disease, but most people can’t differentiate one chronic pain condition from another. NERVEmber is the perfect opportunity to educate those in your life on your condition. Instead of simply typing CRPS, go the extra mile to spell out Complex Regional Pain Syndrome so those in your life can personalize it, and make no mistake that this is is indeed a complex pain condition you and others are living with.
2. Make your awareness posts public.
This way anyone can easily share your posts and support you!
3. Make it personal.
Your friends know and love you, and will remember more about CRPS in the long run if you share details and images from your own personal journey.
4. Make every post count!
Even when you’re reposting a great awareness poster or video from another page, first take a moment to add your own personal caption. Your friends will be more likely to stop and read your words, instead of scroll past.
5. Have a mission.
What is your personal awareness goal this month? Whether you choose fundraising, sharing your personal story, including medical facts, treatment options, or petitioning for the opioid crisis/chronic pain epidemic, if you choose one focused approach on social media, you can make a bigger impact in a shorter period of time.
6. Use hashtags and tags.
For example, adding #colortheworldorange to your posts can help others in the CRPS/RSD community find you.
Tagging a group of friends to a post is another great way to connect to your community during awareness month!
7. Participate in awareness events.
The first Monday in November is Color the World Orange Day, when we ask our friends, family, and communities to wear orange and share their photos to social media!
Between Instagram, Twitter, Facebook, Pinterest, Tumblr, and the blogging communities, there are so many cute events and ways to get involved this month.
Let us know what events you’re getting into this November.
8. Don’t lose momentum.
Try to take advantage of the entire month of November. Have fun, but pace yourself, and make self-care a priority so you can participate throughout the full CRPS/RSD awareness month.
9. Be an ambassador.
If you have the ability to get online and share posters, or tweet status updates, think of yourself as a representative for those who cannot. You are advocating for people in our community who don’t have a voice, for those whose fights have come to an end, and for all of the individuals who might be diagnosed in the future.
Awareness campaigns today lead to future recognition of a rare disease, early diagnosis, early intervention, hope of treatment options, more funding, more education, more critical research, and we hope with more awareness, this unbearable suffering will be cured.
10. You are brave!
Don’t forget how courageously you live with your pain, and overcome every-day obstacles that no one even knows about.
It can be difficult to be vulnerable and discuss our pain, especially when we are used to comforting others so they can feel good that we are ok (even when we aren’t).
You are not complaining when you share your reality. You are not a burden just because you are burdened by pain. Your friends share their lives; there is no shame in sharing this important aspect of yours also.
I hope you have a fabulous NERVEmber! I’ll be looking for you in your orange 😊
What are your tips for raising awareness in your daily life?
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.