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,
Spoiler alert: 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 and persevere, but the focus in education has instead shidted to boosting self-confidence regardless of the effort. He 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 (ie. 1950’s, 1960’s, etc.) were raised to believe they were always surrounded by an invisible support system. Today, that sense of strong community doesn’t exist for most young people.
In the past, people realized that their support system shared responsibility for every success, failure, and contributed overall to the person they became. Because 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 of people 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 of today which, for most people, consists of aloof friends we selectively share information and photos with on social media.
Americans once valued country, faith in government, patriotism, even the President. People were raised connected to a personal faith; 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.
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. We are taught to have faith in ourselves. There is great emphasis on self-determination, and we’re allowed to 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 already working on my Learned Optimism piece when I happened to 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 wrote about).
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].
Other ways to become more resilient: accept “good enough” instead of perfection, focus on what you can control, find deeper meaning in life, accept advice from your loved ones, 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, laugh.
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 Selgman 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.
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 which have 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.
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, people 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.
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, 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.
Monday, November 5th, 2018 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 (IRL) 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.
I’m so pleased to share a favorite blog from a friend and fellow chronic pain warrior, “Pain in the Beck.” In the below post, she did me the honor of writing about how we first “met” online ♡ To me, she has been a butterfly emerging from the shell that illness couldn’t hold her in.
Follow PainintheBeck blog as she writes about her life in NYC as an artist, a student, a chronic illness warrior, and shares her adventures with family. You will be rooting for her, and you’ll be inspired to root more and more for yourself because of her.
(Read article in full at the link below.) Thank you for reading and following.
Every day is is Hope Day here at a Body of Hope blog, but every Wednesday is #HopeDay all around the web. Spread that good stuff around 🙂
I’ve been busy these last few days, trying to help my daughter get ready for her high school prom. Although I still can’t believe that she’s done with this chapter, I’m very excited to see what’s next.
We attended her final high school concert last Friday evening. It was fantastic. The students performed music, danced, sang. It was a fun night. And I got some costume ideas out of it. The best, however, was seeing our gal, on the stage singing “Rebel Rebel,” with her class band as backup. This, while playing the electric ukulele.
My husband has been a musician for most of his life. Our daughter, however, never played an instrument until high school. In a mandatory freshman class, she started with guitar. The expression, “like a fish to water” comes to mind. After exceeding the complexity of the class, she taught herself advanced skills…
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Are you in a heat wave? It seems the entire country is encountering record high’s this week. Our AC has been pushing so hard that it shut down! It got ugly in here, but thankfully, it wasn’t out for long.
Just the short spell of overheating, and increased pain gave me a better appreciation for the privilege of air conditioning. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same amenities.
That’s something I’ve been considering more and more in regard to health.
Not that we should compare ourselves to anyone else, but it can be valuable to approach your life from a different lens now and then.
So, I share my own perspectives with you in the hope it encourages you in your life as so many of you have encouraged me.
So many are dying globally from diseases that can be managed, even treated successfully. I can’t even imagine living the life I’ve been handed in an area where water is miles away, let alone a doctor. But there are children, teens, women, and men who do these same battles each day armed with so much less.
It breaks my heart to think about how people go on living in the same unimaginable pain, and try to accept these very same conditions without the hope of treatment so many of us have here. But, I imagine their lives aren’t built around doctors, medications, and treatments, but instead, seeking to find more meaning behind the curtain of life.
In my reality, it’s easy to fall into depression over the people and life opportunities that I’ve lost in the wake of illness.
Grief is an important part of processing major life changes. There’s nothing wrong with sadness and sorrow. Self loathing and hating my life, however would be.
Still, I struggle with feelings of hopelessness, as is common for all of us fighting chronic pain and rare diseases. As if our bodies aren’t suffering enough, we can suffer just as much in mind and spirit.
I suppose that’s why the mission of seeking out hope is so meaningful to me. I know we don’t always have the strength to find hope for ourselves; our lives at times appear devoid of all light. That’s why I wanted this to be a place anyone could reach out and find it when needed.
A short online course on the history of disability last month had quite an impact on me. Individuals from India, Japan, China, Africa, Australia and the UK shared their personal experiences living with various impairments.
Around the world, people like myself are viewed as cursed, and are disowned by society. Many believe their conditions were brought on by sins from their past lives, or they believe they are being punished for wrongs done by their ancestors. In many parts of the world, society sees disability as contagious- even demonic. It’s not uncommon for disabled children to live on the street, or to be “put away” in facilities for life. We have a shameful history of treating our disabled brethren in a less than dignified manner here in the states as well.
I think of my own faith and how it has shaped my experience through this journey. Jesus was never afraid of being seen around sickness, disability, poverty, or with the people who had been most marginalized. He put a spotlight on the parts of society which had been ignored. He didn’t run away, He ran toward people who were suffering.
I’m not the young woman I was 13 years ago- I’ve been changed by this journey.
There’s always a new version of us that emerges from the flames of adversity; we have to get to know ourselves again and what each new chapter of life will bring next.
I know having multiple rare diseases isn’t a life anyone anywhere would wish for.
Yet, this is my one life, and I’m tasked with finding a way to make the most of the days I have. That challenge to myself can seem impossible, but I’ve become convinced that the fight is worth it. My life is worth fighting for.
And so is yours.
Below is more information about our disabled brothers and sisters around the globe.
-Today in the United States, chronic pain patients are often denied treatment, especially if their condition responds best to opioid pain medication.
-In Japan, women were forced to terminate their pregnancies if the baby was found to have an abnormality. (This law was abolished as recently as 1995.)
-In China, disabled individuals are depicted on tv like side shows which doesn’t translate easily for disabled individuals living in society.
- 70 million people need a wheelchair, but only 10% have access to one
- 360 million people have significant hearing loss, but less than 10% of people who need hearing aids have access to them.
- 93 million children worldwide have moderate or severe disability
Mental Illnesses are on the rise worldwide.
- Depression: 300 million people
- Bipolar affective disorder: 60 million
- Schizophrenia & other psychotic disorders: 21 million
Chronic Illness has become a worldwide epidemic.
- 300 million people live with Rare Diseases (1/2 are children).
- Chronic Pain effects 1.5 Billion people around the world.
- It’s estimated that 60% of the world’s population has at least one chronic illness (highest percentages in developing countries).
If you’ve been hit hard by suicides in the news this week, you are not alone. It’s crushing to learn that these two incredible artists have chosen to end their lives.
Together you can create a plan to help you get on a path BACK TO YOURSELF.
*Your life is worth fighting for.
I’m looking at free online courses today.
I participated in a course last year. It was formatted much like social media with elements of video as well as articles. Two professors from fancy pants universities oversaw the course. There was no formal grade, but you do receive a certificate of completion. Unless you are me.
Straight up, I did not do well, lol.
It was an Introduction to Fiction Writing course, which I thought I would do ok at (cocky much?), but it required more writing than I could personally muster, and I just couldn’t keep up. Partly because my brain is so sluggish, but in large part, because I realized, I was not in a class of my “peers”.
I assumed most of the students would be at an INTRODUCTION to fiction stage– hahahaha! no. In fact, most were just tidying up their novels before publishing, and every fiction writing assignment was an excerpt from their well-developed books. Bitter? Do I sound bitter? I’m not bitter, I’m getting even. I’m going to show that free, not-for-college-credit, online university who they’re messing with.
Seriously though, it was a good experience, and I did enjoy myself. This ol’ brain needs some regular upkeep before it completely turns to jello pudding. (And I’m not kidding.)
So I’m looking into trying another course. Brave, I know…I am so brave.
There are several starting in the next 2 weeks from Future Learn. Since I can’t go on a sexy vacation to Cancun, I’m doing the next best thing– Summer School! Woop woop🎉
For my fellow nerds, I’m including links to a few interesting classes; mind you, there are many more to browse.
P.S., this is not an advertisement. (I suppose the spoiler was me complaining over the last course I took 🤔)
Nearly 200+ more options here
They’re usually around 3 hours per week, but that depends on how much time you want spend chit chatting in the class forums. Each class overview lists the weekly time estimation. You can also upgrade and pay for the class, which gives you fabulous added features…like being forced to take pop quizzes and writing book reports. (Just kidding, I don’t actually know.)
In college, I took several online classes which I loved. They tend to have so many added elements which traditional courses don’t offer, and as a human being, I prefer setting my own schedule. These free courses are similar, but without the extensive assignments or exams.
I figure, you can just read a book on the subject. Orrrrr… you can instead do a course for a few weeks and learn from several books as well as hear expert opinions, watch video footage, and discuss the topic with other thoughtful adults. Door number 2 please!
Plus- I’ll never read the book, so there’s that…